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A METHOD FOR EVALUATION OF THE MANAGEMENT OF
CHRONIC NON-CANCER PAIN
IN GLOBAL CITIES
By
Shehnaz Fatima Lakha
A submitted thesis in conformity with requirements
For the degree of Doctor of Philosophy
Department of Institute of Medical Sciences
University of Toronto
2016
Copyright by Shehnaz Fatima Lakha, 2016
ii
A METHOD FOR EVALUATION OF THE MANAGEMENT OF
CHRONIC NON-CANCER PAIN IN GLOBAL CITIES
Shehnaz Fatima Lakha
Doctor of Philosophy
Department of Institute of Medical Sciences
University of Toronto
2016
ABSTRACT
This dissertation explores the outputs of structures and processes influencing clinical
services for chronic non-cancer pain (CNCP) management globally. It focuses on facilities and
services available in three global cities: Kuwait, Karachi, and Toronto. It develops and
demonstrates qualitative and descriptive survey tools capable of assessing CNCP services and
management, and associated barriers from the perspective of academic pain specialist involved
in delivery of CNCP services in those cities. Those tools are based on an original conceptual
framework for guiding evaluation of CNCP services and management globally.
In addition to a general introduction and discussion sections, the dissertation is made up
of three sections. The first section integrates and reviews the literature on chronic diseases,
CNCP management, and existing health care systems with respect to CNCP services generally
and with a focus on the target global cities in particular. The second section consists of an
analysis of methodological research options and development of a Structure Process Output
evaluation frameworks based on a hybridization of Donabedian and Logistic evaluation
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frameworks (DL-Hybrid). Mixed methodology survey and interview instruments were designed
to evaluate perspectives of pain clinic leader using that DL-Hybrid framework and organized to
characterize three output domains: 1) infrastructure utilization, 2) clinical service delivery and 3)
education and research activities. The third section reports on semi-structured interviews with
academic pain specialists using those instruments. Four participants were recruited from each of
the three global cities (8 men and 4 women). Data was analyzed both quantitatively and
qualitatively. Krippendorff’s thematic clustering was used to reveal themes within qualitative
data. The three cities showed important differences in how the health system operated but pain
specialist shared common training and professional goals and barriers.
This qualitative survey provided insights into those goals and barriers. Similarities were
observed across the three cities reflecting perhaps the fact that by definition global cities
resemble each other economically. The biggest shared obstacle was a lack of resources for
coordinating services and evaluating outputs as well as the lack of recognition of the significance
of CNCP. The study highlights similarities and variation in perception of barriers. It
demonstrates how a global cities lens and a systematic evaluation framework can reveal
structural and process issues related to pain clinic outputs aimed at reducing the burden of
chronic diseases such as chronic pain both locally and globally.
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“Seek knowledge from the cradle to the grave”
(Prophet Mohammed P.B.U.H)
Special tribute to my late father Haji Haroon Lakha and my mother Mrs. Roshan
Haroon Lakha
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Certificate of Originality
I hereby declare, I carried out the work described in this dissertation, under the
supervision of Professor Dr. Peter Pennefather, Department of Leslie Dan Faculty of
Pharmacy, and Institute of Medical Sciences, and Collaborative Program of the Global
Health, University of Toronto.
The work is original, unless otherwise stated and has not been presented to any degree
anywhere else.
_________________________________
Shehnaz Fatima Lakha
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Acknowledgments
“Knowledge is like a fruit. When a fruit grows on a branch of a tree,
its weight causes that branch to bend and bow.
Similarly, when knowledge increases in a person,
it causes him to become humble and not proud and boastful.”
(Anonymous )
First, I am thankful to Allah for inspiring me and giving me the ability, strength and
desire to conduct this study.
As I reflect on this journey, there are a number of people I wish to acknowledge, who
believed in me and contributed either directly or indirectly to my PhD. This work would not have
been possible without their support and contribution.
First and foremost, my deepest gratitude goes to my supervisor Professor Dr. Peter
Pennefather for giving me a wonderful opportunity to be a part of an exciting project. Without
his willingness to act as my supervisor and guidance in research, this research work would not
have been undertaken. I first met Dr. Pennefather when I took his module “Introduction to
Global Health” to find a co-supervisor, and he encouraged me to speak to several Global Health
Scholars who might be interested in the subject. While looking for supervisor, I kept formulating
my research question with his guidance, though it wasn’t in his primary area of research however
as a true mentor, he never left me alone and demonstrated dedication and belief in my topic—
and me. One day after class, I asked him would he be interested in supervising my candidature,
rest is history! Thank you- Dr. Pennefather for being such a great mentor and incomparable role
model. You have always been positive, patient and encouraging.
I wish to express special thanks to my thesis committee members. I owe a debt of
gratitude to Dr. Peri Ballantyne, whose encouragement and interest for my work have motivated
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me to continue my endeavor. I appreciate her edits and detail oriented constructive feedback that
helped improve this thesis. I also thank Professor Dr. Angela Mailis- Gagnon, who encouraged
me to pursue this degree and who has mentored me for almost 12 years, for her insight into what
makes a great teacher, and for challenging my thinking by helping me question assumptions and
view issues from multiple perspectives, which has also inspired this dissertation.
I would like to express my gratitude to my collaborators in Kuwait and Karachi, Dr.
Hanan Badr, and Dr. Mobina Agboatwala because this thesis would not have been possible
without their support and constructive feedback during the whole journey of this thesis.
My special thanks are extended to the Key Informants pain specialist who took time from
their busy schedules to participate in my study and discussions; without them, this research
would not have been possible. Thank you all.
A huge thank you, to all my colleagues at the University Health Network and Leslie Dan
Faculty of Pharmacy, University of Toronto, for their constant support in achieving my goals;
especially Anna Kenyon, Joyce Lee, and Donald Wong for their invaluable assistance, and
encouragement.
A special thanks to Sunita Kak for contributing her expertise and time to help me with
proofreading my early drafts to my final thesis.
A special thanks to my friends: Maria Siddiqui and Ada F. Louffat for their critical mind,
continuous support and friendship; Haris Qasim for his listening ears; and my university group
and Mahjabeen Khan for uplifting prayers.
My Family!!!! How can I ever thank you all? A very special thanks to my mother Mrs.
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Roshan Haroon Lakha, whose prayers and supervision assisted me in my education and her
constant encouragement helped build my self-esteem; my brothers (Haris Haroon Lakha,
Mohammed Hussain Lakha, Junaid Alam) my beloved sisters (Farnaz Lakha, Mahnaz Lakha and
Hina Haris); and nieces (Haya Lakha, Hiyam Lakha and Shanze Alam) for their unconditional
love, encouragement and cheerfulness especially at the time of my thesis. I am especially
grateful to my elder brother, who I am so fortunate to have for encouraging me in all of my
pursuits and inspiring me to follow my dreams and who supported me emotionally and
financially. I also would like to thank my nephew, Zaid Lakha, for the laughter gifted to me with
his cute and tender voice on the phone calling me Aunt BA. Also, I want to thank my extended
LAKHA family for encouraging and supporting me.
I would like to thank the Institute of Medical Sciences and Collaborative Program of
Global Health, University of Toronto for providing me with workshops, seminars and resources
to develop the skills related to my study, for funding me (in part) and giving the opportunity to
conduct this thesis. Particularly, I am grateful to Hazel Pollard, Kamila Lear and Dr. Howard
Mount for their continuous support and words of encouragement.
This is special thanks also to my near and dear ones I may not mentioned, due to
limitations of thesis for their patience and encouragement during this journey.
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Contribution of Author and Co-Authors in submitted manuscripts from Chapter 4 and 6
Appendix Case studies 1, 2, 3:
Author: Shehnaz Fatima Lakha
Contributions: Conceived, searched and synthesized literature review. Generated first draft of
manuscript, integrated comments by coauthors, submitted final draft
Co-Author: Dr. Peter Pennefather
Contributions: Assisted in conceiving the framework design, provided feedback on all stage of
the manuscript, approved final draft.
Co-Author: Dr. Peri Ballantyne
Contributions: Provided feedback on the early and final drafts of the manuscript.
Co-Author: Dr Hanan Badr
Contributions: Provided feedback on early and final drafts of the manuscript.
Co-Author: Dr Mubina Agboatwala
Contributions: Provided feedback on the manuscript.
Co-Author: Dr. Angela Mailis Gagnon
Contributions: Provided critical input as a CNCP expert. Provided comments on the manuscript
at all stages.
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List of Abbreviations
ASA: Acetylsalicylic acid
CAM: Complementary and alternative medicine
CNCP: Chronic non-cancer pain
CPS: Canadian Pain Society
CPSO: College of Physicians and Surgeons of Ontario
ED: Emergency department
EMRO: Eastern Mediterranean Region Office
GP: General Physicians
IASP: International association for study of pain
LBP: Low back pain
LHIN Local Health Integration Networks
MOH: Ministry of Health
MRI: Magnetic resonance imaging
MSK: Musculoskeletal Pain
NCD: Non-Communicable Disease
NP : Neuropathic Pain
NSAID: Non-steroidal anti-inflammatory
OHIP: Ontario Health Insurance Plan
OPD: Outpatient Department
OTC: Over the counter
PHC: Primary health care
Px: Participant number
SNRI: Selective norepinephrine reuptake inhibitors
SSRI: Selective Serotonin Reuptake Inhibitors
TCAs: Tricyclic antidepressants
WHO: World Health Organization
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Table of Content
Abstract 350 words----------------------------------------------------------------------------------------ii
Acknowledgments ----------------------------------------------------------------------------------------vi
List of abbreviation ----------------------------------------------------------------------------------------x
Overview of the Thesis ---------------------------------------------------------------------------------xiv
List of Tables---------------------------------------------------------------------------------------------xiii
List of Figures--------------------------------------------------------------------------------------------xiii
Chapter 1- Introduction, Motivation, Contribution and Research Question 1.1. Background--------------------------------------------------------------------------------------- 02
1.2. Area of Interest-----------------------------------------------------------------------------------10
1.3. Ontology of General Concepts-----------------------------------------------------------------11
1.4. Rationale: Research Statement; Contribution -----------------------------------------------11
1.5. Objectives: Statement of aims, goals, and objectives---------------------------------------17
1.6. Research Questions -----------------------------------------------------------------------------20
Chapter 2- General Literature Review 2.1. Contextual Information on the Literature Review----------------------------------------- 22
2.2. Overview of Literature Review----------------------------------------------------------------23
2.3. Current State of Knowledge------------------------------------------------------------------- 24
2.3.1. Chronic Non-Cancer Pain (CNCP) -------------------------------------------------- 25
2.3.2. Pain Management Interventions-------------------------------------------------------28
2.3.3. Complex Chronic Conditions and Co-Morbidities--------------------------------- 37
2.3.4. Health System Challenges------------------------------------------------------------- 39
2.3.5. Global Health Implications of Complex Chronic Conditions---------------------41
2.3.6. A Global Cities Lens -------------------------------------------------------------------42
2.3.7. A Pragmatic Perspective--------------------------------------------------------------- 44
2.3.8. Use of Personas and Vignettes-------------------------------------------------------- 45
2.4. Summary of Literature Review---------------------------------------------------------------47
Chapter 3 - Case Studies 3.1. Health Services for CNCP management in global cities i.e. Kuwait, Karachi,
Toronto------------------------------------------------------------------------------------------- 50
3.2. Comparison of Case Studies-------------------------------------------------------------------54
3.3. Theoretical Development-----------------------------------------------------------------------57
Chapter 4- Conceptual Framework: Availability of Services for Management of.
Chronic Non-Cancer Pain in Global Cities Abstract -----------------------------------------------------------------------------------------------61
4.1. Introduction---------------------------------------------------------------------------------------62
4.2. Framework Development-----------------------------------------------------------------------71
4.3. Specifying Models for Conceptual Framework----------------------------------------------73
4.4. D-L Hybrid Evaluation Framework Building Blocks---------------------------------------76
4.5. Framework Description------------------------------------------------------------------------- 80
4.6. Discussion-----------------------------------------------------------------------------------------85
4.7. Conclusion---------------------------------------------------------------------------------------- 87
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Chapter 5 – Evaluation Methodology 5.1. Research Approach and Rationale------------------------------------------------------------90
5.2. Research Design---------------------------------------------------------------------------------91
5.3. Methods ------------------------------------------------------------------------------------------92
5.4. Recruitment of Participants--------------------------------------------------------------------92
5.5. Source of Key informants----------------------------------------------------------------------93
5.6. Study Questionnaire-----------------------------------------------------------------------------94
5.7. Practice Interview-------------------------------------------------------------------------------96
5.8. Data Collection----------------------------------------------------------------------------------94
5.9. Data Analysis------------------------------------------------------------------------------------98
5.10. Goodness and Trustworthiness of Data ---------------------------------------------------100
5.11. Ethics Approval-------------------------------------------------------------------------------102
Chapter 6– A Pain Clinic Director's Perspective on Barriers for Management of
Chronic Non-Cancer Pain in Global Cities- A Qualitative study Abstract ---------------------------------------------------------------------------------------------105
6.1. Introduction------------------------------------------------------------------------------------ 106
6.2. Methods-----------------------------------------------------------------------------------------108
6.3. Results ------------------------------------------------------------------------------------------114
6.4. Discussion ------------------------------------------------------------------------------------- 124
6.5. Conclusion--------------------------------------------------------------------------------------128
Chapter 7 – Survey of Clinic Outputs Associated with Services Provided for
Management of Chronic Non-Cancer Pain in Global Cities 7.1. Introduction ------------------------------------------------------------------------------------130
7.2. Methods ----------------------------------------------------------------------------------------131
7.3. Results ----------------------------------------------------------------------------------------- 131
7.3.1. Survey Results–Toronto--------------------------------------------------------------133
7.3.2. Survey Results– Kuwait--------------------------------------------------------------154
7.3.3. Survey Results– Karachi-------------------------------------------------------------176
7.3.4. Mapping of Survey Output on the D-L Hybrid Framework---------------------198
7.4. Discussion--------------------------------------------------------------------------------------201
7.5. Conclusion-------------------------------------------------------------------------------------- 213
Chapter 8- General Discussion and Limitations 8.1. Discussion --------------------------------------------------------------------------------------216
8.2. Limitation of the study------------------------------------------------------------------------219
Chapter 9- Conclusion: Contribution, Implications and Future Direction
9.1. Conclusion -------------------------------------------------------------------------------------224
9.2. Strength of the study ------------------------------------------------------------------------- 226
9.3. Implication of the study ----------------------------------------------------------------------228
9.3.1. Clinical Implication ------------------------------------------------------------------ 228
9.3.2. Implication of Model -----------------------------------------------------------------230
9.4. Future direction--------------------------------------------------------------------------------231
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Bibliography Page References-------------------------------------------------------------------------------------------234
Reports-----------------------------------------------------------------------------------------------269
List of Tables Table 1: Dimension of Evaluation in the D-L Hybrid framework--------------------------------- 78
Table 2: Principal Barriers in Pain Programs--------------------------------------------------------121
Table 3a: Perception of Barrier for Managing CNCP-Infrastructure-----------------------------122
Table 3b: Perception of Barrier for Managing CNCP- Clinical Services/ practices----------- 122
Table 3c: Perception of Barrier for Managing CNCP-Education---------------------------------123
Table 4: Mapping of Services Described by Key informant per their location----------------- 195
Table 5: Expected Barriers of CNCP management in Kuwait-------------------------------------297
Table 6: Case Studies of Patient Personas- Kuwait-------------------------------------------------300
Table 7: Case studies of Patient Vignettes- Karachi------------------------------------------------325
Table 8: Barriers to Effective Chronic Non- Cancer Pain in Karachi----------------------------328
List of Figures Fig 1: Pharmacological and Non-pharmacological Treatment Options----------------------------30
Fig 2: Comparison of Case studies--------------------------------------------------------------------- 56
Fig 3: D-L Hybrid Evaluation Framework-------------------------------------------------------------79
Fig 4: Sample Dendrogram or tree like diagram---------------------------------------------------- 113
Fig 5: Themes of the survey under the Domain of D-L Hybrid Framework Output----------- 196
Fig 6: Themes of Survey Mapped of D-L Hybrid Framework------------------------------------197
Fig 7: Kuwait National Health System--------------------------------------------------------------- 287
Fig 8: Trajectory for Integrating Management of Chronic Care---------------------------------- 303
Fig 9: Opportunities for Chronic Pain Management in Karachi-----------------------------------330
Appendix Appendix 1. Health Services for Chronic Non-Cancer Pain Management In Kuwait: A Case
Study Review----------------------------------------------------------------------------277
Appendix 2. Chronic Non-Cancer Pain Management Capacity in Pakistan as an Indicator of its
Readiness to Deal with Chronic Disease Burdens- A Case Study Review----- 310
Appendix 3. Health Services for Chronic Non-Cancer Pain Management In Toronto: A Case
Study Review----------------------------------------------------------------------------334
Appendix 4. Comprehensive Search Strategy for Literature Review--------------------------- 350
Appendix 5. Consent form---------------------------------------------------------------------------- 354
Appendix 6. Questionnaire---------------------------------------------------------------------------- 359
Appendix 7. Ethics Approval the University of Toronto------------------------------------------367
Appendix 8. Ethics Approval Kuwait University---------------------------------------------------368
Appendix 9. Ethics Approval Karachi--------------------------------------------------------------- 369
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OVERVIEW OF THE THESIS
This section offers an overview of the whole thesis that helps navigate readers to content that
interest to them. The thesis follows each chapter in such a way that it enables the understanding
of the topics. This thesis structured into the following chapters:
Section I: Background
Chapter 1- Introduction and Rationale
This chapter provides a relevant background on the landscape of pain management and services
globally. It illustrates the global burden of CNCP, perspective of global cities, existing health
care system that often impedes to access chronic pain services and management. It also provides
the rationale, objectives, focus on goals and justification for the thesis.
Chapter 2- Literature Review
The purpose of this chapter is to present existing relevant literature on the burden of chronic
disease, CNCP and demonstrate gaps related to understanding about CNCP management services
available globally. The literature presented provides rationale and significance for studying this
topic. In addition, this assists in identifying the needs of a case study of an individual global
city, studied in the thesis. This review of current literature also shaped the research questions,
development of framework and methods.
Chapter 3- Case Studies: Kuwait; Karachi; Toronto
This chapter provides a snap shot of the purpose and situation of health Services for CNCP
management in global cities i.e. Kuwait, Karachi, Toronto. The abstract of the three case are
presented in this chapter and complete case studies are attached in the appendix. This chapter and
its appendixes provide relevant literature review in the form of case studies and narrative
reviews, with the additional illustration of Personas. The case studies explain the health care
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system and delivery of pain management services of each global city in a way that is comparable
among global cities and comprehensible to an international audience.
Section II: Methodology:
Chapter 4- Evaluative Framework
This chapter describes the development of an appropriate framework to support the ongoing
monitoring and evaluation of evolving CNCP clinical practices. It provides a synthesis of the
Donabedian and Logic model evaluation framework in a hybrid form known as D-L Hybrid. The
utility of the D-L Hybrid evaluation framework illustrates with the case of comparing Structures,
Processes, and Outputs of CNCP management clinics in the global cities.
Chapter 5 – Collection of Qualitative and Quantitative Descriptive Data
This chapter defines the epistemological framework used in this qualitative study, as well as the
philosophical foundations, research design and sites, participant information, data collection
methods analysis, and researcher positionality.
Section III: Results:
Chapter 6- A Pain Clinic Director's Perspective on Barriers for Management of Chronic
Non-Cancer Pain in Global Cities- A Qualitative study
This chapter provides descriptive quantitative results regarding the pain specialist that
participated and ranking of barriers.
Chapter 7- Survey of Clinic Outputs Associated with Services Provided for Management of
Chronic Non-Cancer Pain in Global Cities
This chapter characterizes pain specialists' experiences related to delivery of CNCP management
services in their pain clinics of their global cities through descriptive qualitative assessment of
their responses to the semi-structured interview.
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Chapter 8- Discussions and Limitations
This chapter summarizes outcomes of the research work, mentions study limitations.
Chapter 9- Conclusion: Recommendation, Contribution, Future Direction
This chapter provides recommendations, implication and finally direction for future research.
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Chapter 1- Introduction, Motivation, Contribution and Research Questions
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INTRODUCTION
1.1 Background
Chronic pain is a pervasive problem that affects cancer and non-cancer patients. There is
significant evidence to prove oncologists manage pain associated with cancer (Howie, 2013). In
contrast, chronic non-cancer pain (CNCP) can have a multitude of causes and produce a wide
variety of disabilities. For the purposes of this thesis, all chronic pain disorders outside of cancer
pain or end-of -life pain are collectively labeled ‘‘chronic non-cancer pain’’ (CNCP). There
appears to be a gap in knowledge of appropriate management of the causes and disabilities
associated with CNCP (Chou, 2009). Therefore, this study only deals with CNCP management.
In this thesis, the terms chronic pain and chronic non-cancer pain (CNCP) are used
interchangeably.
From a global health perspective, there is now an international push to reduce health care
inequities globally and to recognize a fundamental human right of access to the best possible
level of health care (Factsheet 31: The Right to Health, 2008). This, in general, should apply to
managing pain as well. There are also efforts to evaluate the global burden of disease including
pain as a guide to global investment in reducing that burden (Murray, 2012). Due to the huge
economic burden caused by health sector and normalizing care globally, there has to be a
financial commitment and global cooperation among nations.
Chronic (persistent) non-cancer pain (CNCP) is a common and important health problem
in the adult population worldwide confirmed by epidemiological studies. A significant
proportion of the population suffers from chronic pain caused by a wide range of conditions
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(Elliott, 1999; Elliott, 2002). Among adults in different western nations, the prevalence of CNCP
ranges from 2% to 40% with a median point prevalence of 15%. This variation is due to the
research methodologies adopted by the different nations globally (Verhaak, 1998). CNCP
requires pharmacological and non-pharmacological management with consideration to individual
requirements of patients.
Health systems around the world overburdened with chronic diseases and chronic pain.
Evaluating health care system’s capacity to manage chronic disease and pain identifies
opportunities in improving pain management. This evaluation may guide national and
international investments in increasing the efficiency and effectiveness of those health care
systems. Challenges arising in normalizing care for chronic pain are due to divergence in access
to and delivery of health care resources globally. An additional challenge is differences in
cultural attitudes concerning the purpose and nature of health care.
There is an extensive literature that compares the national health care systems, which
provide lessons based on countries’ experiences and their performance (Rodwin, 2002). As
urbanization increases, there emerge health risks, and as population ages, national governments
need to modernize public health care infrastructure and give uniformity to health services across
the nations. Studying the health care systems of global cities provides refined comparisons and
cross-national learning. The commerce driven rise of global cities, with similar civic
infrastructure, information grids, and organized tertiary care hospitals provides a platform for co-
locating necessary resources for modern health care delivery. More than half of the world’s
population now lives in urban settings, with most people having access to some form of
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global/world city (Hales, 2010). Global/world cities defined as cities having an important impact
on the global economy and ranked based on factors linked to that impact (Sassen, 1991). Saskia
Sassen argues that global cities will increasingly become city states rivaling national and sub-
national political units (Haass, 1998). Despite the surge of interest in global cities, however,
studies of health infrastructure, health systems and chronic disease including pain, among world
cities, are notably absent from the literature. This thesis takes a city’s perspective rather than a
nation’s perspective in evaluating access to CNCP management services globally.
WHO identifies financial, geographical, cultural, organizational and sociological barriers
as access and management of CNCP in health care systems; however, every society has its own
realities. The context of a health care system within a global city setting in a region enables a
direct comparison to health care system infrastructures in other global cities across the world.
Global cities share same demographics in hosting large groups of migrant workers and expatriate
managers and their dependents, who will likely need local access to chronic diseases and pain
management services. This cohort can serve as a comparative group across global cities. This
thesis targets the delivery of services for CNCP management across the three global cities,
Karachi, Pakistan, Kuwait, Kuwait and Toronto, Canada.
Burden of chronic non-cancer pain:
As documented by the World Health Organization (WHO) (WHO Report, 2000), low to
middle income countries account only for 18 % of world income and 11 % of global health
expenditure, yet endure 93 % of the world’s disease burden. Globally, low back pain (LBP),
neck pain, migraine, osteoarthritis, and other musculoskeletal disorders (MSD) are among the
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top 12 most common causes of disability in the Global Burden of Disease Study 2010 (Vos,
2013). Chronic pain creates a major public health problem that impact negatively on quality-of-
life issues and health care costs universally. However, there is a dearth of literature on the burden
of chronic pain from global south. Although, many conditions commonly associated with pain
symptoms such as those resulting from motor vehicle accidents, work injury and osteoarthritis,
are recognized as major contributors to global disease burden and documented by WHO (WHO
Report, 2003; Vos, 2013), there is little information about the quality of care or levels of
suffering associated with acute pain and CNCP symptoms globally. Road traffic accidents and
violence, both of which can cause severe pain, are among the leading causes of death and
disability in many developing countries (Mathers, 2006). A 14 -nation WHO study found that
about one in ten people develop a chronic pain condition every year (Gureje, 1998). In back
disorders, pain is the most common indication for seeking treatment (Waddell 2004; Koho
2006), and the prevalence of chronic musculoskeletal pain varies from 4% to 13% (Mourao,
2010). The prevalence of moderate to severe chronic pain is 19% for all adults in Europe, as it is
also in Finland (Breivik, 2006). A recent study documents how chronic pain is clearly the most
important current and future cause of morbidity and disability across the world, with large recent
increases in both the number of individuals affected and years lost to disability, coupled rising
prevalence rates (Rice, 2016 in Lancet). However, even this picture actually underestimates the
total burden imposed by chronic pain. The International Society for the Study of Pain has
recognized this and is collaborating with the WHO both to highlight the problem and to try to
encourage solutions (Bond, 2004).
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It has been suggested that there is an "silent epidemic" of chronic pain globally (Sessle,
2011) and this epidemic together with the way pain problems are treated and compensated
currently, may be considered “economic threats” (Nachemson, 1994). The costs of chronic pain,
both in terms of direct treatment and indirect costs due to lost productivity are greater than those
associated with cancer, heart diseases and HIV combined (Schopflocher, 2010). Estimates place
direct health care costs of inadequately treated pain for Canada to be more than $6 billion per
year and productivity costs related to job loss and sick days at $37 billion per year (Phillips,
2008a; Schopflocher, 2010). Chronic pain is associated with higher disruption of quality of life
metrics when compared to other chronic diseases such as chronic lung or heart disease
(Schopflocher, 2010). This estimate scales with population as Stewarts et al. (2003) estimated
$61.2 billion per year in pain-related lost productivity in the US. This accounted for 27% of the
total estimated work-related cost of pain conditions in the US workforce (Stewarts, 2003).
Additional serious costs are associated with income replacement, or disability payments.
Remarkably, less than 10% of the chronic pain population consumes as much as 70-80% of the
resources including sick leave benefits and health care visits (Franklin, 2008). Despite the fact
that the existence of chronic pain is undisputed, there is a lack of scientific evidence pertaining to
management of chronic non-cancer pain globally, or estimates of the social and economic
benefits that might accrue from investing in such management.
Inadequate CNCP Management:
Complete data regarding the prevalence and management of CNCP in many jurisdictions
including global cities are lacking, but it is clear that, even when patients do access health care
services, pain relief remains elusive (Size, 2007). Global cities with major differences in
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population, geography, politics and culture that are undergoing economic transition primarily
unite by a general lack and allocation of capital resources for pain management. Evidence
suggests that there are issues that hinder people who suffer from chronic illnesses from gaining
access to adequate pain treatment. In dozens of publications covering several decades, WHO,
INCB, health care providers, academics and others have chronicled those barriers in detail
(Human Rights Watch, 2009). A common theme in many such publications is the failure of
many governments and health systems, in general, to take appropriate steps to organize,
coordinate, and support access to pain treatment services.
Pain care affected by the diverse competencies and training skills by multiple physicians,
who assess, evaluate and manage the complex pain disorders. Pain medicine is at present
practiced mainly as a subspecialty within a number of professions. A certain ratio of the chronic
pain population managed through specialized pain treatment facilities. Individuals with complex
chronic disease and associated pain assessed by specialists and diagnosed based on their
specialty. Under the current system, multiple physicians contribute to a patient’s “pain
management” using a management plan devised by a pain specialist or pain management team.
Some plans may have a limited focus or perhaps a limited range of interventions, such as only
pharmacological interventions, when treating patient with CNCP, this may not effectively
address their issues. Over last few the decades’ uptake of more comprehensive pain management
plans has been variable, attempts were made to improve the CNCP management through
publication and dissemination of clinical practices guidelines. Remarkably, there has been no
effort to explore the impact of these changes and the ability of pain management specialist to
provide the standard care in the specialized pain clinic. Pain specialists are instrumental in
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managing complex and challenging patients in a biopsychosocial model, and they can serve as
leaders in pain management infrastructure. However, little or no information exists on the pain
specialist experience and perception of the barriers that influence their services and management
of CNCP.
Inequities in access to pain relief
CNCP management is mostly encountered in primary care, but such management can be
challenging as CNCP remains one of the most poorly understood and untreated conditions in
primary care regardless of the setting (Gureje, 1998). Both primary care physicians and pain
specialists vary in the way they treat chronic pain and in their attitudes regarding pain treatment.
The magnitude of the inadequacy of pain management is not easy to assess globally. One
‘‘barometer’’ of pain control activities is a country’s morphine consumption from mandatory
annual reports to the United Nations’ International Narcotics Control Board. These data indicate
that seven High Income Countries (Australia, Austria, Canada, France, Germany, UK, and US)
comprising less than 10% of the world’s population, utilized nearly 85% of the medical
morphine consumed globally. In contrast, all low and middle-income countries comprising
nearly 85% of the world’s population accounted for less than 10% of the global consumption of
morphine (International Narcotics Control Board Report, 2011). Furthermore, global inequalities
in CNCP management are not purely due to attitudinal obstacles, but also result from a man-
made access barrier: such as high price. Morphine-sulphate is generally cost-effective analgesic
appropriate for global cities of Global south; a 10 mg generic immediate-release tablet should not
cost more than 1 cent (Brennan, 2007; Webster, 2007). Although a typical month long
prescription of morphine-sulphate tablets should cost from $1.80 to $5.40, the real cost in many
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of these global cities varies between $60 and $180 per monthly prescription (Brennan, 2007). A
month of opioid therapy can be more than 200% the average monthly income in Argentina and
Mexico (De Lima, 2004).
The idea of dedicated pain clinics still has not reached a broad level of acceptance by the
medical society or by the many other health care settings and professionals who encounter pain
patients (Minerbi, 2013). Globally, pain facilities vary in their complexity of setting, staffing,
and costs. There is no uniform method of accreditation or certification of pain facilities. Patients
from CNCP condition do not have enough pain specialist to treat them and the supply of pain
specialists is declining (Breuer, 2007). Equitable access to proper pain medication can improve
the quality of life for all patients. Inadequate pain management and services continue to exist in
global cities, but the utility of pain medicine is rapidly recognized. It is imperative to
acknowledge a crucial need to engage in the systematic expansion of access to chronic pain
management clinics globally.
Most studies concerning the issues of clinical chronic pain management and services are
of a quantitative nature, with only a few using a qualitative design (Carr, 1999; Clark, 2006). A
qualitative approach is valuable for exploring work demands in clinical areas and levels of
accountability surrounding pain management (Rees, 2000; Richards, 2007). Furthermore,
published studies have not explored the interplay between barriers directly related to clinical
training, and those related to settings and policies, within the institution where they practice.
The goal of this PhD project is to develop and test a survey tool for characterizing how health
care practitioners living in global cities are dealing with the challenge of assessing and managing
10
chronic pain regardless of whether those cities are located in low, middle or high-income
countries (e.g. as indicated by the GDP of those countries, World Bank). Indeed, a structural
capacity to help people suffering from chronic pain can serve as a proxy indicator of health
system development. Further, the presence of the health care provider in a global city determines
that the structures and processes necessary for the health care system are in place. Pain clinic
leaders are uniquely poised to serve as key informants on these issues.
1.2. Area of interest
Before beginning my Ph.D. research, I was employed as a Research Analyst at the
Toronto Western Hospital in a Pain clinic for 8 years. Over those years, I became fascinated with
the ever-evolving field of pain research. This fascination brought forth passion that resulted in
me putting extra hours to learn the ropes of research in the field of CNCP management. Meeting
daily with patients suffering from pain during my research duties stimulated my passion further
for research that might point to opportunities to reduce the burden of chronic pain. An important
aspect of my role as a research coordinator involved, doing chart reviews of patients and
studying the particular issues with chronic pain that dominated their life. This fueled my desire to
study chronic pain, its management and how that management is influenced by the social and
cultural differences that different patient brought to the clinic in Toronto and Canada.
In 2010, while preparing for the presentation of a paper entitled “the obstacles of pain
management in a developing country” at the IASP Pakistan chapter conference, I visited the
clinics in Karachi that allowed me to view the challenges of accessing effective pain
management services in this global city in Pakistan. This motivated me to seek redress for the
11
challenges faced by those patients and their providers of CNCP services in Karachi. This also
motivated my desire to seek out a Ph.D. supervisor who could help me develop a project related
to that goal. The impact of chronic pain on the lives of people living in the global cities like
Karachi and Toronto drew my attention and whetted my appetite to study the availability of the
services for CNCP globally. The purpose of this dissertation is to evaluate pain management
services, which focus on clinical practice, aimed at identifying gaps in CNCP management in
global cities.
1.3. Ontology of General Concepts
The ontology of general concepts presented in this thesis is rooted in the discipline of
CNCP management. It provides definition of relevant terms and so that the formal relationships
between them can be understood with respect, to CNCP management. Researching evaluation
framework theories in existing literature helped me to position the use those terms. The concepts
arising from evaluation, pain management, and its services came from a variety of sources.
1.4. Rationale: Statement of Need and Contribution
CNCP is a common and important health problem for which patients seek care from
health systems globally. These patients may be under-treated or not treated, due to a dearth of
chronic pain specialists and specialized pain clinics. A multidisciplinary pain management
approach has evolved recently because it has proven to be more effective and less costly than the
traditional methods of addressing chronic pain. However, there is no standard way of
implementing this approach (Turk, 2007). Each program incorporates a broad range of
modalities and idiosyncratic components. Nevertheless, these diverse implementations of a
12
multidisciplinary pain clinic approach will likely share some core characteristics and challenges
(Henry, 2008). As described above, there is a substantial gap between standard clinical practice
and increasingly sophisticated knowledge concerning the nature of pain and options available for
effective pain management that this knowledge informs. Therefore, there is a need to evaluate
the barriers to improved clinical practice regarding pain management globally regardless of the
jurisdictions of the pain clinics.
According to McKinsey Global Institute study (2012), almost the entire world economy
can be represented itself by approximately 400 global cities. The larger pools of global city
health care workers and their greater specialization in medical activities as compared to health
care workers in non-global cities will be expected to lead to higher returns on health care
investment and therefore be of strategic importance for those cities in maintaining their global
rankings. This thesis argues that, in contrast to nation-states, global cities provide opportunities
for specific comparisons around the world concerning global barriers affecting access to more
effective CNCP management services. Much of the literature on cross-national comparisons of
health systems and health and social policies has focused in the past on analysis of national level
public expenditure data. This reflects a nation-state perspective on setting policies and guiding
health care expenditures (Rodwin, 2002). A global cities lens represents a new approach to the
comparative analysis of global clinical services targeted at management of global CNCP
burdens. Numerous studies related to CNCP services document the challenges of pain
management in general (Lynch, 2007; Dobkin, 2008; Peng, 2008), however there has been no
systematic approach put forward for assessing the clinical practices or organizational structure of
CNCP services on a global scale from a pain specialist's perspective.
13
The thesis project came into existence due to the lack of approach of evaluating the state
of CNCP management services globally. While clinical specialists associated with existing
clinical chronic pain management services are aware of the benefits of chronic pain assessment
and management, they are also aware of systemic barriers limiting their ability to act on that
knowledge and may even have insights into how those services might be improved. This thesis
developed a hybrid framework based on Donabedian and Logic evaluation models that I will
refer here as the D-L Hybrid evaluation framework (see Chapter 4). This D-L hybrid evaluation
framework reported Structures, Processes and Outputs of CNCP clinics. This framework is
shown to help documentation of description and barriers of CNCP services and management
globally distributed pain clinics. In order to implement this evaluation approach, semi-structured
interview tool was developed. I demonstrate in this thesis how the 1-2 hour period needed to
complete the survey interview can provide quantitative and qualitative descriptive evidence
useful in characterizing how health systems in global cities are dealing with the challenge of
CNCP assessment and management. This was evident regardless of the level of economic
development of the countries in which the participants were located (e.g. as indicated by their
GDP). In addition to providing useful information about CNCP challenges, the evidence
concerning a capacity to help people suffering from CNCP can serve as a proxy indicator of
health system development within the global city.
A significant contribution and innovation described in this thesis are the development of
the D-L Hybrid framework and demonstration of its utility for assisting clinic directors and
institutional supporters in assessing and improving program effectiveness. This allows for
14
normative comparison with equivalent clinics in other global cities, while adapting services to
local contexts. The model focuses on structures, processes and outputs that can serve as a starting
point in addressing and analyzing barriers. Application of the D-L Hybrid framework involves
collecting data about how processes and structures impacts clinic outputs is used to identify the
barriers/gaps hindering desired outputs of these health system elements.
An additional important contribution was the completion of case study-reviews of
published literature concerning health system structures, processes and outputs related to CNCP
pain management services found in the cities studied. This allowed me to characterize the local
and global opportunities that could be achieved if more effective CNCP services were delivered
locally. The understanding of the local conditions and constraint that I derived from the case
studies, allowed me to probe deeper into key informant responses then might otherwise be
possible. Although, these case studies are included in this thesis as appendices (1, 2, 3), they
represent important scholarly contributions in their own right.
The goal of the thesis is to demonstrate an efficient and effective methodology for
evaluating a local health systems capacity to manage chronic pain and identify opportunities to
improve pain care. Application of the key informant methodology combined with systematic
case study reviews is shown to provide evidence with the potential for guiding local and global
investments in enhancing those health systems and for reducing personal suffering as well as
social and economic disruption associated with the burden of chronic pain. Application of the
methodology also generates information that should be useful for health system governance
groups, institutions, professionals and other stakeholder participants by identifying factors that
15
they may be able to influence in useful and productive ways through resource allocations and
policy development. Finally, the data described in the thesis highlights key areas for future
research on a need for community-based CNCP pain management services to provide continuity
of care initiated in the specialized pain clinics studied in this work. The findings from the thesis
can be adapted and generalized for other specialized pain management services being delivered
in other global city settings. To best of our knowledge, this study is the first of its kind to
delineate characterization of structural and clinical practices for managing CNCP patients in
global cities. The conceptual framework presented here and the methodologies developed using
that framework can also be applied to the creation of formative evaluative descriptions of other
specialized health care services for other chronic conditions.
16
Research Statements:
1) A D-L Hybrid evaluation framework is composed of interacting structure, process and
output domains that can provide a guiding conceptual model for describing principle
determinants of barriers and facilitators influencing the success/failure of chronic pain
management services as perceived by pain clinic directors.
2) Since directors of specialized pain clinics operating within the modern medical system
paradigm will share similar training, competencies and professional identities, the
similarities and differences in the perceptions of barriers to achieving their goals as a pain
management specialist will reflect in part their character and in part the environment in
which they are practicing. A global cities lens will normalize, somewhat, the influence of
practicing in different countries classified as low, middle and high-income countries.
3) Qualitative evaluation of the results of semi-structured interview with key informants will
reveal description and barriers of CNCP services in global cities that are useful for
characterizing global opportunities to reduce those barriers.
17
1.5. Objectives: statement of aim, objectives and goals
Aim: The overall aim of this thesis is to characterize the structure of clinical services for chronic
pain management globally with particular focus on global cities. This is achieved by developing
qualitative and descriptive survey tools capable of assessing the state of health services for
chronic pain management from the perspective of health care practitioners involved in the
delivery of those services. Data collected with those tools enables characterization of the
landscape of chronic pain management services and addresses barriers. To meet the aim of the
study, practitioners responsible for delivery of chronic pain management services in three
representative global cities, Kuwait City, Kuwait; Karachi, Pakistan and Toronto, Canada were
surveyed.
Objectives: The following objectives were used to guide the study:
Objective 1. To conduct narrative reviews and case studies that map relevant literature
concerning the availability of CNCP management services, in CNCP clinical settings of the
global cities.
Objective 2. To examine relevant framework and evaluation theories for assessing health system
service structures. The aim is creating a hybrid framework appropriate for guiding development
and interpretation of the survey tools that aim to characterize outputs of structure, and processes,
of chronic pain management services in the representative global city settings.
18
Based on objectives 1 and 2, a questionnaire developed and administered to the
practitioners responsible for pain management services in the three global cities targeted in this
thesis.
Objective 3. To characterize clinical services for chronic pain management in the selected global
cities and infer whether the current services facilitate or impede the chronic pain management
globally.
Objective 4. To assess the barriers in structure and services, of specialized chronic pain clinics
in select global cities i.e. Kuwait, Karachi, and Toronto.
Goals of the Thesis
GOAL #1 Establish a description of the health system context.
This goal was achieved by studying the context of relevant information of pain management and
services available in global cities and how the state of economic development influences that
landscape. The first step of the study was to identify and synthesize the information
systematically. Data and information from the papers were sorted for individual global cities. In
addition, the narrative review with the combination of case studies revealed how chronic pain
management services operating in different cities, are influenced by the organizers, providers and
recipients of care in those cities.
19
GOAL #2 Establish a conceptual model to guide evaluation of CNCP management clinics
Achieving this goal involved a comprehensive literature search and analysis to explore the
nature of analytical frameworks and health system theories appropriate for characterizing chronic
pain management services in different global cities. It was deemed necessary to combine or
hybridize two existing evaluation approaches the Donabedian and the Logic evaluation models.
The D-L Hybrid framework iteration represented a combination of empirically- supported
criteria, with each element making an independent contribution to the description and assessment
of the chronic pain management services. Mixed methodology survey and interview instruments
were designed using this framework to reveal the structures, processes, and outputs of chronic
pain management services in the three global cities: Toronto, Kuwait City and Karachi in a way
that formed the narrative review of this thesis. This work also demonstrated systematically to
evaluate health system dynamics supporting delivery of chronic pain management services in
other global cities.
GOALS #3 and, #4 Comparative Characterization and Analysis of Pain Clinics
Finally, this research study characterized, compared and contrasted features of the organization,
delivery, and accessibility of treatment and care modalities widely recognized for the chronic
pain management in the selected global cities. Structuring an interview with pain clinic directors
around a newly developed survey questionnaire completed by the pain practitioners revealed
their experiences and perception of barriers they face in having an impact through their
specialized pain clinics generated both quantitative and qualitative data that could be drawn upon
to generate a descriptive picture of similarities and differences in the pain management landscape
in the global cities.
20
1.6. Research Questions:
This thesis answers the following four questions:
1) Can systematic literature reviews provide an overview of structure, process and output issues
likely to impact on the availability of CNCP management services in the global cities?
2) Can an evaluative framework informed by the systematic literature reviews be adapted to the
task of evaluation of CNCP services in the global cities?
3) Can structure, process and output elements of the evaluative framework be used to frame
qualitative and quantitative descriptions of similarities and differences regarding barriers to
access to optimal chronic pain management within and among the global cities i.e. Kuwait,
Karachi, and Toronto, as perceived by pain management specialists?
4) Does a global cities lens work in normalizing data concerning access to globalized structures
processes and outputs so that particular impacts of local conditions are recognized?
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Chapter 2-General Literature Review
22
2.1. Contextual Information on the Literature Review
I have initiated the thesis with the notion of conducting a systematic review. In pursuing a
systematic review, significant limitations were discovered particularly in relation to the initial
research question “What are the services available for CNCP in low, middle and high income
countries?” Reviewing the broad spectrum of published literature regarding CNCP found no
connection to the initial research question. Addressing the pros and cons of a systematic review,
brought forth altered key questions and type of review. Thus, I began a scoping review with new
broader questions and a broad search strategy that delved into relevant literature regarding CNCP
management. A thematic approach highlighted the common themes and areas in peer- reviewed
papers. These peer reviewed papers were organized according to the structure of care, process of
services, and outcome of CNCP patients’ elements in low, middle and high-income countries.
Studies that were reviewed lacked information on CNCP management from low and middle-
income countries and identified a variety of limitations in research design that prohibited
generalization of the findings.
Based on the scoping review findings, the need for alternative research questions or
approaches in CNCP management in low-middle and high income countries was identified. As a
result, I decided to undertake a realist review (Pawson, 2005) with the same search strategy.
However, the same issue of lack of information from low and middle-income countries existed.
After exhausting all the possible options, I honed in on the idea of studying the CNCP
management in global cities as a case study method (Crowe, 2011) for individual sites, along
with a narrative review for in-depth information.
23
The main objective of the case studies and narrative literature review was to understand
the landscape of pain management and services available in a global city in a way that was
comparable amongst and comprehensible to an international audience. I also reviewed the
existing health care system, organizational structure of public and private system of the selected
global cities of Kuwait, Karachi and Toronto. Chapter 3 presents a snapshot of these individual
cities studied for the thesis.
This chapter presents a general literature review for the thesis. For the general literature
review, I utilized the relevant published evidence found through the systematic and scoping
search strategies.
2.2. Overview of the literature Review:
This literature review provides a means of filling an information gap concerning the management
and services of patients with chronic non-cancer pain globally. The idea was to document the
variation in the organization of health services for chronic patients globally. CNCP is a chronic
condition worldwide due to its prevalence, associated disability, impact on quality of life, and the
costs associated with the extensive use of health care services by CNCP patients. Although the
origin or type of pain may differ, once pain becomes chronic the modalities needed for treatment
are generally similar and the health services issues cross discipline boundaries. The main
objective of this review is to scope and summarize the evidence and the gaps in knowledge
relating to the availability of services for CNCP management.
24
2.3. Current State of Knowledge
The literature review separated into major topics and within each topic, the narrative
flows from general to specific. The topics are:
Chronic Non-Cancer Pain
Pain Management Interventions
Complex Chronic Conditions and Co-Morbidities
Health System Challenges
Global Health Implications of Chronic Disease
A Global Cities Lens
A Pragmatic Perspective
Use of Personas and Vignettes
This literature review is comprehensive, as it is a result of systematic search strategy
described below. The literature review provides context for the study and demonstrates gaps
related to an understanding of CNCP management and services in the global cities.
Identification and development of the research questions
I began the search strategy for literature review broadly with two questions: What is the
extent of published evidence on the availability of services for CNCP globally? What are the
gaps in the knowledge base in this emerging field?
Search Strategy
Relevant Studies
A comprehensive search of the following sources was performed: MEDLINE (OVID)
(1956 to 2014), EMBASE, CINAHL, and PsychINFO, (1974 to 2014). I also reviewed the
reference lists in the articles, reviews and textbooks retrieved. In addition, I searched more
broadly for grey literature and unpublished reviews relating to management and services of
25
CNCP. In addition, I contacted experts in the field. I limited the database search, to publications
in English and for studies involving humans. The search strategy using keywords or a
combination of subject headings and keywords is shown in Appendix 1. After the electronic
searches, the data were exported into Reference Manager 10, duplicates were removed.
Selecting Studies for Review
I screened all titles and abstracts for review studies that met the inclusion criteria and
exclusion criteria. Articles selected for review, were collected and organized together from
databases. The inclusion criteria were: English language publication; management of CNCP
described; services and pain population, and pain assessment identified. Exclusion criteria
included: non-English language publication, non-human, emergency services, and participants
with acute pain. Non-empirical studies, theses, books, and commentaries were included to
support the full range of literature regarding pain, its management, and services.
Charting Information from the Studies
I used a narrative analysis to identify the broad context of relevant information. The
following literature review is a result of an in-depth analysis of the existing evidence.
2.3.1. Chronic Non-Cancer Pain
The official definition of pain by the IASP, International Association for the Study of
Pain, states that pain is “an unpleasant sensory and emotional experience associated with actual
26
or potential tissue damage, or described in terms of such damage… it is also always unpleasant
and therefore also an emotional experience… pain is always subjective” (Merskey, 1994). Nay &
Fetherstonhaugh (2012) use the established definition of pain, which was first used by
McCaffrey (1968): “Whatever the experiencing person says, existing whenever the person says it
does”. However, the authors suggest that despite pain being an individual experience involving,
e.g., shock, unpleasant to unbearable sensations, humiliation, redefinition of the self and loss of
function, pain is also a life experience, including culture, religion, and other aspects of being
influencing how we interpret pain and cope with it. Therefore, Breivik et al. (2006) consider
chronic pain as an illness in its own right; chronic pain is like any other chronic condition. Taken
together, this means that pain is mostly a mental state, an experience, without any difference
between a mental or physical pain, only a complete individual experience. CNCP is usually
defined as pain persisting over 3 - 6 months, and constitutes a prominent societal and economic
burden (Henderson, 2013).
Pain Mechanisms/ causes
CNCP encompasses a diverse group of diagnoses and syndromes. Physiologically, pain
originates from nociceptive, neuropathic, or mixed mechanisms. Neuropathic pain results from
pain initiated or caused by a primary lesion or dysfunction of the nervous system (IASP, 1994).
Examples include post-stroke pain syndrome, spinal cord injury pain, multiple sclerosis, post
amputation pain, peripheral nerve damage due to injury, disease or surgery, diabetic neuropathy,
post herpetic neuralgia etc. Nociceptive pain is the result of tissue injury and arises primarily
from disorders of musculoskeletal tissues and less so visceral tissues, such as the stomach,
bowels, heart, kidney etc. In the United States headache, back pain, arthritis, and other
27
musculoskeletal pains are the most common conditions of CNCP resulting in lost work time
(Stewart, 2003).
Many pain disorders arise from a combination of both types of pain mechanisms. An
example of this is low back pain with leg pain or sciatica that is caused by injury to spinal nerves
and is often accompanied by muscle spasm and other musculoskeletal disorders in the back. In
many cases of chronic pain, there is no apparent peripheral biomedical pathology; the type and
degree of organic pathology does not distinguish between those who develop chronic disabling
pain from those who do not; often the severity of pain and related disability appears grossly
disproportionate to the degree of peripheral injury (Turk, 1999). These and other considerations
have given rise to psychosocial concepts in an effort to understand CNCP (Turk, 2002). This is
important from a policy perspective, as it highlights the complexity of pain mechanism. There is
a need for considerable expertise and sensitivity within the clinical provider community to
effectively manage the more severe cases of CNCP. As each case is distinct, it is now recognized
that CNCP management is best delivered through patient centered programs mounted in a
coordinated comprehensive manner and supporting inter-professional collaboration (Hayes,
2011).
Services for Chronic Non-Cancer Pain
Pain services are generally divided into 2 categories: 1) Diagnosis and 2) Management.
28
Diagnosis of CNCP
Identification of medical diagnosis depends on three things: the history obtained from the
patient, the signs noticed on physical examination, and the results of laboratory investigations.
(Hampton, 1975). Clinical diagnosis is the most widely used approach in chronic non- cancer
pain; however, various diagnostic laboratory techniques are available to determine the cause of
pain. Tests used to diagnose the cause of pain may include blood tests, imaging techniques such
as X-rays, Computerized Axonal Tomography (CAT scan), Magnetic Resonance Imaging
(MRI), ultrasound techniques, bone scan etc., and electrophysiological techniques such as
electromyography and nerve conduction studies (EMG/NCT), somatosensory potentials etc. In
addition, behavioral and psychological aspects of pain are also important and require assessment.
Therefore, a bio-psychosocial assessment should be performed for all patients before developing
a plan to manage their pain (Hooten, 2013).
Each patient and pain problem is unique and requires an individualized approach.
However, it is important to note that even though patients’ pain may differ in origin or type, once
pain becomes chronic the modalities needed for treatment are similar.
2.3.2. Pain Management Interventions
CNCP can be treated with a multiplicity of modalities such as pharmacotherapy, physical
treatments including exercise, local ice and heat, joint/ tissue mobilization; psychological/
behavioral treatments; injections to soft tissues and nerves or nerve roots, and more invasive
(surgical) treatments (CPSO Evidence Based Recommendations, 2000; Lynch ME, 2011). While
a rehabilitative model that offers care from various disciplines is considered to be the “gold
29
standard” for patients with CNCP that persists despite less intensive treatment (and is
recommended by the IASP), the interdisciplinary approach is considered optimal in pain clinics
(Veillette, 2004).
Pharmacological and Non-Pharmacological Treatment options:
The range of options available for chronic pain management is summarized as follows:
30
Figure 1: Pharmacological and Non-pharmacological Treatment Options:
Figure 1 provides the range of modalities available for chronic pain management
31
Pharmacological Treatment Options
Simple analgesics and Non-Steroidal Anti-inflammatory Drugs (NSAIDS)
Generally for the treatment of pain Acetaminophen is used as an oral analgesic and an
antipyretic. Excluding arthritic pain, it relieves most types of pain (Lynch, 2006).
Acetaminophen derivatives are easily available over the counter (OTC). The oldest non-opioid
analgesics Acetylsalicylic acid (ASA), also available without a prescription over the counter. The
general side-effects of therapeutic doses of ASA are gastric problems and bleedings (Lynch,
2011a).
Research has found that Non-steroidal anti-inflammatory drugs (NSAIDs) such as
ibuprofen, and naproxen, are most beneficial in cases of acute pain, or flare-ups in patients with
chronic nociceptive pain (Sorensen, 2000, Ruoff, 2003). Many of these drugs are accessed OTC.
Originally, it was thought that pain relief was due to reducing inflammation. However, research
(Peng, 2011) has shown that there is hardly any association between anti-inflammatory activity
and analgesic efficacy. NSAID analgesic action occurs not only through peripheral inhibition of
prostaglandin synthesis, but also through a variety of other peripheral and central mechanisms
(Cashman, 1996; McCormack, 1994). In general, NSAID use is limited for patients with chronic
nociceptive pain due to gastrointestinal (GI) side effects (Henry, 1996). The newer, so-called
COX-2 selective inhibitors (also called COXIBs), such as Celebrex, were prepared to avoid this
side effect and, this was proved in the large, randomized, controlled trials for rofecoxib and other
similar drugs (Bomardier, 2000). However, when using these medications over a long period of
time, caution should be applied (Lynch, 2006).
32
Topical NSAID preparations relieved pain in certain acute and chronic nociceptive
conditions (McQuay, 1996).
Antidepressants and anticonvulsants
Evidence from randomized controlled trials have proved that older antidepressants, such
as tricyclic antidepressants (TCAs) have an analgesic effect in several chronic pain conditions
(McQuay, 1996; Dworkin, 2003; Lynch, 2001). Specifically, TCAs has demonstrated relief in
pain due to diabetic neuropathy, post-herpetic neuralgia, tension headache, migraine, atypical
facial pain, fibromyalgia and low back pain.
Other types of antidepressants include Selective Norepinephrine Reuptake Inhibitors
(SNRIs) and Selective Serotonin Reuptake Inhibitors (SSRIs). Non-randomized studies indicate
Venlafaxine (SNRI) is an effective antidepressant, it is effective in pain conditions such as post-
herpetic neuralgia, painful polyneuropathy, headache, neuropathic pain, atypical facial pain and
radicular back pain (Galer, 1995; Sussman, 2003). While, Duloxetine (SNRI) has been shown in
randomized controlled trials to be effective in the management of several CNCP conditions
(Arnold, 2004) and Health Canada has approved it for the treatment of anxiety, depression,
certain neuropathic pains, fibromyalgia and chronic low back pain.
33
Anti-convulsant medications help relieve nerve pain, based on their capability to decrease
neuronal excitability (Griffin, 2005). Gabapentin, pregabalin and carbamazepine (Lynch, 2006);
are the most studied agents, also there is an increasing evidence of lamotrigerine, topiramate and
oxcarbazepine (Lynch, 2006) to relief pain. Randomized controlled trials have demonstrated that
gabapentin provides significantly more pain relief than placebo in post-herpetic neuralgia (Rice,
2001; Rowbotham, 1998), diabetic neuropathy (Backonja,1998; Morello, 1999) and mixed
diagnoses of neuropathic pain (Serpell, 2002). A newer “gabapentinoid” is pregabalin which also
has significant analgesic effectiveness in post-herpetic neuralgia (Dworkin, 2003; Sabatowski,
2004) and painful diabetic peripheral neuropathy (Lesser, 2004; Richter, 2005). Pregabalin is
approved for the treatment of diabetic neuropathy pain, post-hepretic neuralgia, spinal cord
injury pain and fibromyalgia by Health Canada.
The early anticonvulsants phenytoin, valproate and carbamazepine as well as, the newer
anticonvulsants lamotrigerine, pregabalin, gabapentin, lacosamide, topiramate and levetiracetam,
act through a multiplicity of mechanisms, which may inhibit with pathways and
neurotransmitters involved in chronic pain (Lynch, 2011a).
Opioids
Opioids are a class of medications that act on delta, kappa, and mu receptors found in
brain, spinal cord, peripheral sensory neurons and intestinal tract. They are natural, synthetic or
semi–synthetic derivatives of morphine. Opioids are available in both short and long acting
preparations. They have been shown to be effective for both pain and function in patients with
certain nociceptive and neuropathic pain syndromes when compared to placebo (Cicero, 2009).
34
Furlan et al (2010) have conducted a systematic review of opioids for CNCP. This systematic
review of sixty-two randomized trials confirmed the previous findings, namely: Opioids were
more effective than placebo in patients with nociceptive pain and neuropathic pain, and that there
was no difference in efficacy between weak and strong opioids.
Opioids may be given intravenously, orally or topically. They are effective for severe
pain; however, there is always the risk of dependence and side effects. There are different types
of opioids, classified as either weak or strong. Weak opioids include codeine and tramadol where
strong opioids include oxycodone, fentanyl, hydrocodone, hydromorphone, morphine,
oxymorphone and pentazocine.
Several studies paint the picture of the opioid “dilemma” in the global north (Mailis,
2011; Dhalla, 2011; Gomes, 2014) and demonstrate the need to strike the balance between the
benefits and hazards of opioid use. Opioids are a popular choice for the treatment of intractable
painful conditions, but barriers to effective pain assessment and management exist in both
developed and developing countries. Huge disparities exist in opiate production vs actual needs,
as well as in the distribution of morphine in developed countries vs developing countries.
Imbalances between opioid consumption and availability persist despite international efforts in
recent years. Comprehensive guidelines for goal-directed and patient-friendly chronic opiate
therapy potentially will enhance the outlook for future chronic pain management (Manjiani,
2014).
35
Compliance with Pharmacological Treatments
Research consistently finds that patient compliance with prescribed medication regimens
for the treatment of chronic medical conditions is frequently challenging (Zhang, 2013).
Therefore, non-compliance also may be the norm rather than the exception when it comes to
medications prescribed for CNCP. According to one study, more than 8-of-10 patients prescribed
analgesics of any type for CNCP pain may not always follow instructions for safe and effective
use. Nearly half (48%) of patients were non-adherent with their opioid medication regimens,
with 14% admitting to overusing and 34% underusing a given opioid prescriptions (Broekmans,
2010). There is supported evidence to show that non-compliance to medication is due to multi-
causal occurrence. The seriousness of the illness, the cost of treatment, and treatment adverse
effects can all affect compliance. The patient's age, mental status, and memory capacity are also
crucial factors in the patient's compliance. The complexity of the recommendation, the duration
of the regimen, the type of medical advice, the clarity of the written direction, and the amount of
instruction provided are examples of factors that influence patient adherence (Van den Bemt,
2012). “Medical misuse,” is either over- or underuse of drugs, could undermine effective therapy
and lead to severe problems. However, patients should be prescribed appropriate pain reliever
rather than letting them suffer with CNCP.
Non- Pharmacological Treatment Options
Non-pharmacological interventions can supplement pharmacological treatment for pain
relief. Recent studies show that more than half of CNCP patients use only medicines to manage
their condition (Henderson, 2013). Non-pharmacological approach to pain management is
36
growing, and alternative therapies are contributing to holistic patient care alongside with
analgesics. It has been found that the use of patient education, cognitive behavioural therapy
(CBT), relaxation, music, biofeedback, and other techniques improves CNCP conditions
(Bennett, 2009; Jain, 2010; Bradt, 2011). Functional restoration with specific behavioral
interventions, simulated or actual physical tasks in a supervised environment may enhance
function and improve strength, endurance, flexibility, and cardiovascular fitness (Schonstein,
2003). Clinicians should routinely integrate therapies that target the psychosocial and functional
factors that contribute to or are affected by CNCP. However, modalities such as TENS,
reflexology and acupuncture have not shown much benefit, (Ernst, 2009; Walsh, 2009; Paley,
2011). Consequently, for improvement of options for treating pain, research on non-
pharmacological approaches becomes an important factor.
Similar to other pain management regimes, interventional pain management can help
chronic pain patients to manage their pain. Interventional pain management uses therapeutic
injections to lessen pain (Manchikanti, 2008). Besides its therapeutic benefit, interventional pain
management can play a role in diagnosing the source of the pain. For e.g. an x-ray or magnetic
resonance imaging (MRI) scan of the spine can show different areas from where the pain is
generated. Interventional pain management techniques play a part in a multidisciplinary
approach to relieve pain and other symptoms (Manchikanti, 2008). Interventional pain
approaches are more effective if used in combination with psychological therapies, active
rehabilitation strategies and prescription medications.
37
For providing multimodality therapy for the highly disabled CNCP patients,
interdisciplinary or multidisciplinary pain management approaches may be the best methods as
they coordinate physical, vocational, or psychological components by at least two health care
professionals with different clinical backgrounds (Karjalainen, 2001; Chou, 2009). Patients are
more likely to benefit when highly motivated to participate, as interdisciplinary rehabilitation
requires a high degree of engagement.
2.3.3. Complex Chronic Conditions and Co-Morbidities
Chronic diseases and conditions, such as heart disease, stroke, cancer, type 2 diabetes,
obesity, arthritis and chronic pain are among the most common and persistent (Ward, 2014). In
this thesis chronic condition, non-communicable diseases (NCD) and chronic pain will be used
interchangeably. These diseases cannot be cured and they develop slowly due to life style
choices that damage health. The chronic conditions are attributed to the combination of the risk
factor or individual factor depending upon demographics of people, including health and age.
Today’s world is struggling with many diseases such obesity, diabetes and heart conditions that
lead to premature deaths, while a decade ago similar population were fighting with
undernutrition. This scenario brings home the speed with which population are undergoing
cultural and social changes that impact their health. Chronic diseases prevalence is undisputed
challenge to the global health. Non-communicable conditions accounts for nearly two-thirds of
deaths globally, out of the 38 million people who died from chronic disease every year, half were
under 70 and half were women. Almost three quarters of these deaths occur in low- and middle-
income countries (Islam, 2014). WHO predicts 17% increase in total deaths from NCDs in the
next 10 years (WHO Report, 2013). These premature deaths can be prevented by implementing
38
simple measures that will reduce the risk factors and allow health system to counter them. The
significant rise of these diseases over the next decade and the impact on general and specifically
in low and middle-income countries is disturbing (Lim, 2012; Mozaffarian, 2014).
In 2010, estimated direct and indirect cost of heart diseases was around $863 billion and
is estimated to rise 22 percent to $1,044 billion by 2030, which kills more than 17 million people
year. According to a study by the World Economic Forum (WEF), the global economic impact
of the five leading chronic diseases, cancer, diabetes, mental illness, heart disease, and
respiratory disease, could reach $47 trillion over the next 20 years (WEF, 2011). Olivier
Raynaud, the WEF's senior director of health, said in a written statement. "The numbers indicate
that non-communicable diseases have the potential to not only bankrupt health systems but to
also put a brake on the global economy.” When the financial burden to individuals is calculated,
the loss to the economy can be extensive. In most countries, the poorest people have the highest
risk of developing chronic disease and they are least able to cope with the resulting financial
consequences (Abegunde, 2007).
Globally we have made strides in extending the longevity of the general population but
the chronic conditions that arise due to ageing and the demand of multiple co-morbidities have a
tremendous impact on individuals their families and their health care providers. Chronic pain is
of particular concern as a comorbid condition considering its prevalence among older persons,
who also tend to have other chronic conditions and its association with increased disability,
poorer health status and decreased quality of life in general (Butchart, 2009). With rapidly aging
populations worldwide, global cities from both developed and developing countries need to
39
educate their young citizens about the geriatric population and increase the capacity of their older
population so they can support the increasing cost of health care, old age and disability insurance
programs. Similarly, millions more are disabled, temporarily or permanently, by injuries
(Chandran, 2010).
Existing proven solutions can lower the rates of death and disability from intentional and
unintentional injuries through prevention. In the workplace, employers will need to carry the
increasing financial burden of chronic disease, and society as a whole, particularly through
health-care systems, will need to understand better how to deal with this emerging problem.
These societal imperatives call attention to the need to control the major causes of chronic
disease in the population at large. Effective strategies need to develop understanding of how
patients manage chronic conditions with chronic pain (Butchart, 2009). Countries need to
manage extensive healthcare burden as its impact on economic growth. The prevention of
chronic diseases and their management pose a challenge globally consequently, improving
quality of care and health outcomes from chronic conditions for complex patients and their
health care system (Fortin, 2005; Nolte, 2008).
2.3.4. Health System Challenges
Health care systems had best evolved while addressing patients’ need for treatment of
infectious disease. Countries from the global north and south spend billions of dollars on hospital
admissions, and expensive technologies for acute care but there is not much improvement in
populations’ health status.
40
Health care system faces many challenges with chronic diseases care being
uncoordinated and fragmented around the globe. Chronic disease is the most significant cost-
driven in our health-care system, and changes are needed to manage these complex health
problems better (Arredondo, 2015). On average, people with chronic pain rely heavily on the
health care system as they use the system more often and frequently consume more health care
resources and significantly see multiple health care professionals and have long-term care. With
the ageing of population, the cost of chronic conditions will continue to rise, from an estimated
75 percent of total health care expenditures in 2000 to nearly 80 percent in 2020 (Wu, 2000).
Global funding for non-communicable diseases is minimal and coordination is limited, although
opportunities exist for integrating approaches to communicable and non-communicable diseases.
Health care systems vary in complexity and context between different countries and
regions in the world. Constraints arise in the way in which individual national health systems are
designed and function. For chronic diseases, many interventions are required from prevention to
management, such as primary prevention, proactive case finding (e.g., assessment of risk factors
and screening), education of public and health-care workers, efficient referrals, pharmacological
and psychosocial interventions, long-term surveillance, and monitoring and assessment of quality
of care (Beaglehole, 2008). These interventions may be available in the global North and South,
yet there are substantial differences between the resource availability and the barriers to the
implementation of the strategies.
The WHO global report highlighted the need of meeting the rising burden of chronic
conditions and their impact on the health care system by reorganizing current structure of health
41
system around the world. It signifies to decision makes the changes needed to the present health
care solution (WHO, 2011a). In September 2011, world leaders committed to develop national
multi-sectoral plans to prevent and control NCDs at the United Nations General Assembly
(WHO, 2011b). They also focused on efforts and progress made by developing the national
targets. In 2013, a survey conducted by WHO reported 95% of the countries have a unit or
department in the Ministry of Health responsible for NCDs. Half of these countries have an
operational plan with a dedicated budget for NCD. The number of countries surveyed for the risk
factors jumped from 30% in 2011 to 63% in 2013. This survey illustrates the alignment of
policies and resources with the nine global targets and the WHO Global NCD Action Plan 2013-
2020 by many countries; however, improvement in many countries has been insufficient and
highly uneven (WHO, 2014).
2.3.5. Global Health Implications of Chronic Disease
Developments in biomedical research and behavioral management have significantly
improved the ability to control chronic conditions like diabetes, cardiovascular disease,
HIV/AIDS, and cancer. There is strong evidence from around the globe that patients receiving
effective treatments, self-management support, and regular follow-up, effectively manage their
chronic conditions (Halpin, 2010).
Chronic conditions require a multi-dimensional healthcare system that will sustain across
a continuum of care. Health professionals with diverse expertise should deliver the evidence-
based interventions. During the continuum of care, a regular supply of clean facilities and
pharmaceuticals is highly recommended, as well use of appropriate technologies in the health
42
care facilities (Halpin, 2010). In order to overcome the major risk factor these efforts have to
accompany effective public health policies. Such interventions are possible only with a highly
functioning health care system that delivers disease prevention, and education services, together
with integrated care beyond the health care sector.
2.3.6. A Global Cities Lens
Today the world has become a global village where ideas, economics, are shared by
continents, countries and cities. Globalization cannot be defined as a single component, in a set
time for individuals but it applicable to all people in all situations. Globalization involves
transfer of knowledge, policies across borders that helps build cultural stability and relationship.
In a global process, there is “an establishment of the global market free from sociopolitical
control” (Nikitin, 2000). In 1995, Martin Khor, President of the Third World Network in
Malaysia, referred to globalization as “colonization” (Khor, 1995). Friedman (2005a) in his work
illustrated there would be an eradication of healthcare challenges by sharing the knowledge into
a global network that traditionally focused locally. These two different perspectives are rooted in
different world positions. Various authors have defined globalization in different ways with
relative success, all authors agree that defining this term is not simple. In this thesis, we will
attempt to narrow the conceptual ideas and empirical work done by urbanization.
Cities have emerged as human beings moved from nomadic lifestyle towards owning
homes and forming societies. The twentieth century saw that half the global population living in
cities (UN Report, 2014). Cities are diverse in nature, having varying exposure to modernization,
and composed of distinctive social phenomenon. A global city also called world city or
43
sometimes an alpha city or world center; concept arises from geography and urban studies. A
Global city is considered an important node of the economic system, as it strategically deals with
hierarchy of importance of the global system of finance and trade. The Global Cities Index ranks
cities based on five dimensions across 27 metrics such as business activity, human capital,
information exchange, cultural experience, and political engagement. The global cities organized
in different clusters based on their economic, political and cultural power they yield on the
international market (Taylor, 2004). There is a history of relationships amongst cities (Abu-
Lughod, 2000) and globalization has changed them over time (Shin, 2000). Global cities are
tiered in several groups: Alpha++, Alpha, Alpha--; Beta++, Beta, Beta-; Gamma++, Gamma,
Gamma-.
Global cities represent the control centers of the global economy that often connect with
each other through flows of information, commodities, capital, and people (Smith, 2002; Taylor,
2004 Brenner, 2006). Health has become an important aspect of information exchange on the
world stage. Global health has prioritized exchange of information commodity and capital for its
betterment. Funding for global health has reached ≈$30 billion/year, and the United States
provides at least one third of this total (Murray, 2011a). However, due to complex nature of
health structure, coordination across the global cities becomes disorganized.
Health structure in global cities has emerged as a field of inquiry and steadily broadening
basis for activities in medicine, public health, social and environmental sciences and health
policies. Haris Ali and Roger Keil (2008) have significantly contributed to the world of
infectious disease in the contemporary world in relation to both disease transmission and
44
outbreak response in the global cities. In recent years, the paradigms of global cities serve to
unite and focus on the variety of NCDs determining the management of health care. However,
there is lack of literature around the CNCP and global cities perspectives. This thesis will
overcome the disparities in literature on CNCP and global cities perspective. It also illustrates the
emergence of the threats posed by CNCP around the globe and in relation to both burden of
prevalence and management of CNCP.
2.3.7. A Pragmatic Perspective
This thesis is influenced by pragmatic and critical perspectives and assumptions in
evaluating CNCP management globally. Assumptions were based on previous personal
professional experiences and academic knowledge of CNCP. Global cities are always in the
news with respect to flow of capital, immigration, and health care strategies. The purpose of this
study is to bring to light a new perspective with respect to globalized CNCP services and
management provided for patients in particular global cities. It has relevance however for the
challenge of managing CNCP in all types of global cities.
This thesis started as a series of debates with my supervisor on the appropriateness of
using pain clinics in different countries in evaluating the impact of globalization on global access
to CNCP services. The fact that over 50% of the world now lives in urban settings suggested that
an urban lens might be more appropriate than a focus at the national level. The fact that cities in
low, middle and high-income countries can still be considered global in terms of the economic
activity that flows through them suggested that a global cities lens would be more appropriate
than a national lens. In this thesis the first step of exploring issues related to the global burden of
45
CNCP, and the globalized response to that burden, is studying health care strategies and CNCP
services management services found in a convenience sample of the three global cities; Kuwait,
Karachi and Toronto.
This thesis explores the possibility of synthesizing qualitative studies, whilst
acknowledging some of the challenges in that regard. It is guided by a combination of four
related approaches: 1) narratives reviews and case study across the three global cities of their
CNCP services and management; 2) historical analysis of the three global cities public health
care system; 3) evaluation frameworks; and 4) pragmatic indicators for comparing CNCP
services outputs across globalized settings.
I have adopted a pragmatic approach to the work in the field of CNCP management while
being aware of the differing philosophical stances underlying the various approaches to
qualitative syntheses. The pragmatic cross-sectional approach aimed to characterize the available
services of CNCP in the global cities studied. This thesis highlights the beliefs that qualitative
methods have an important role to play in understanding how factors hinder the delivery of
clinical services for chronic disease such as CNCP, in particular because they allow the
complexities of related issues to be represented through the voices of the key informants.
2.3.8. Use of Personas and Vignettes
Personas are fictional characters based on actual observed behaviors of real users. The
purpose of personas is to create reliable and realistic representations of key audience segments to
describe what has to be accomplished and why. These representations are based on qualitative
46
and quantitative user research and web analytics (Cooper, 2007; Pruitt, 2010). The application of
personas is in its infancy in medical sciences research and marketing (Vincent, 2014). A patient
persona is a representation of the goals and behavior of a hypothesized group of service users.
Personas put a human face to the abstract data. Developing a persona for a fictional CNCP,
patient and their expected thought processes helps researchers communicate what has been
suggested to them will be the thought processes of real people resembling the persona. The
reference experience is built around a scenario of CNCP patients and health services associates,
which the user will understand. Specifically, it summarizes the structure of a health system, and
how underlying process elements work during a scenario of using the personas instead of real
patients. We use this experience to accomplish the goals of the case studies.
A vignette is a brief, carefully written description of a person or situation designed to
simulate key features of a real world scenario (Alexander, 1978; Atzmüller, 2010). Vignettes
have been used in medical research to investigate health sciences and behaviours associated with
it. (e.g., Alexander, 1978; Bachmann, 2008; Wallander, 2009). By allowing the investigator to
manipulate specific aspects of a written stimulus while controlling others, vignette or persona-
based experimental designs offer a glimpse into how individuals’ thoughts, feelings, behaviors,
and decisions are affected by factors that may not be easily accessible in real-life situations
because of confounding sources of variability that cannot be controlled. These questions are of
great interest to researchers of health care service provisions, and its conformance with practice
standards and quality of care in out-patient settings (Peabody, 2000)
47
Best practice for effective personas and vignettes are developed to represent the patient
population and define the objective with a context (Pruitt, 2010; Mulder, 2007). This dissertation
supports best practices of persona and vignettes, and is aimed at creating an experience for
CNCP health services stakeholders in global cities. In this thesis, personas/vignettes were
developed based on chronic pain patient’s online behavior, and contained details specific to their
condition and contextually relevant behavior (Appendix #1 and Appendix #2). The clinical side
of the investigating team validated these personas and vignettes. This process illustrates insight
into experience and pain management services in certain locations, and sheds light on factors that
can help optimize study design for exploring pain management questions in global cities.
2.4. Summary of Literature Review.
From the literature, it is evident that CNCP patients face many challenges in accessing
the services for CNCP management around the globe. Moreover, CNCP patients have
experienced disparities in the assessment and treatment for their pain. Their access to healthcare
has often been restricted due to social, financial, cultural and governance. Evidence from the
literature suggests that chronic pain management might be a problem for all the stakeholders,
regardless of their geographical entity. Exploratory research is needed to learn about the services
of CNCP and its management globally. Therefore, this thesis explores the management of
chronic pain from the perspective of academic pain clinic leaders, to gain an “insiders”
perspective. This thesis also explores potential barriers to CNCP services. The three case studies
of Kuwait, Karachi, and Toronto follow in the appendix section of the thesis in the format of
journal articles. Chapter 3 presents a snapshot of these individual cities studied for the thesis.
48
These case studies manuscripts address the landscape of health care system and delivery of
CNCP in the three global cities.
49
Chapter 3 - Case Studies
50
3.1. Health Services for CNCP management in the global cities of Kuwait, Karachi, Toronto
Global trends of 21st century suggest urbanization as having a significant impact on
health. By 2050, it is estimated that over 70% of the world’s population will live in cities and
over 90% of city dwelling population will live in low- and middle-income countries. This data
suggests that global health will increasingly depend on improving the health of people in these
urbanized population centers (Hales, 2010). There has been limited comparative research of
urban areas particularly in the global cities of middle-income and developing nations. Although,
there has been some comparative research on national healthcare systems, a national focus will
have difficulty addressing the impact of urbanization (Rodwin, 2002; Gusmano 2016). Firstly,
there are large variations in public health and health care systems functioning within nations.
Secondly, it is difficult to separate the importance of healthcare systems from economic, socio-
cultural, and other determinants of population health. This is true at the local level and even more
difficult at national levels. Thirdly, despite the rise of the number of nations providing benefits,
even in the most developed countries, many aspects of health care and social policy are
disconnected between national and state levels (Rodwin, 2002; Gusmano 2016).
When I first chose to use the global city concept, I did so with the goal of taking a
comparative approach regarding the global deployment of CNCP services and for evaluating the
effectiveness of those services from a global perspective. Cities identified as “Global” or
“World” cities are defined as cities having an important impact on the global economy and are
ranked based on factors linked to that impact (McKinsey Global Institute report, 2012). In the
51
field of CNCP management, that lens will help to refine exploration of factors that that need to
be adapted to local conditions in order to reduce global disability associated with CNCP.
My long term goal is to carry out research activities that highlight the crucial need to
engage in systematic expansion of access to chronic pain management clinics globally and to
raise awareness of research and treatment options for improving CNCP management globally, I
propose to survey directors of public and private clinical practices that self-identify as providing
pain management services. I focus on a convenience sample of three urban settings, Kuwait City,
Karachi and Toronto. However, before surveying these pain clinics, it is important to understand
the delivery and accessibility of treatment and care modalities widely recognized to reduce the
burden of chronic non-cancer pain in those three settings. This chapter is designed to provide
insight into health system factors that help or hinder access the CNCP management in that
sample of global cities.
Search Strategies
A comprehensive search strategy process conducted that includes PubMed, Scholars
Portal, Sociological Abstracts and Google Scholar databases. In a systematic manner, peer-
reviewed journals, grey literature and references cited in relevant articles were reviewed, for all
case studies separately. In addition, government and international organization reports, which
were not documented or reported in peer review journals, were extracted for statistical facts and
information. Words used for search strategy includes: “chronic non-cancer pain,” “chronic pain
patient” “Pakistan,” “developing countries,” “muskcoskeletal pain,” “neuropathic pain,”
52
“causes,” “prevalence,” “pain management,” “pain therapies,” and “treatment for pain” .
Following are the abstracts of three detailed case studies presented in the Appendix.
Kuwait
The experience of chronic pain is universal, yet pain management services delivered by
health professionals vary substantially depending on context and patient. This review is a part of
a series that examines the issue of chronic non-cancer pain services and management in different
global cities. The review is structured as a case study of availability of management services for
people living with chronic non-cancer pain within the context of the Kuwait health systems. The
case is built from evidence in the published literature identified through a comprehensive review
process. Evolution of the organizational structure of public and private health systems in Kuwait
is described. These are discussed in terms of how they impact on delivery of comprehensive
chronic pain management service by health professionals resident in Kuwait. The review then
uses a description of chronic pain patient personas to highlight expected barriers as well as
compliance issues with services likely to be encountered in Kuwait. The case study analysis and
persona description illustrate a need to move beyond pain symptom management towards
considering the entire person and his/her individuated experience of pain such that healthcare
success is judged by enhancement of patient well-being rather than access to services. A road
map for improving integrative chronic pain management in Kuwait is discussed. (See Appendix
1 p.277)
53
Karachi
Chronic non-cancer pain (CNCP) affects people everywhere in the world but people in
developing countries have far less access to therapies that provide relief. There are often missed
opportunities to implement these therapies. Karachi shares many of the characteristic of
megacities of global south and represent Pakistan in the global city league. This review reports
on availability of health management and pain services in Karachi for CNCP and their
comparability to those found in other global cities. The literature about CNCP and its
management in Karachi and Pakistan is scarce. Nevertheless, some conclusions can be made. In
order to inform a global cities audience, a brief review of current health system and pain service
in Karachi and Pakistan are discussed together with barriers that impede pain service outputs.
The present review uses the lens of vignettes using patient personas to represent expected
experiences with chronic pain and the likely impact of pain management services currently
available in public, charitable and private sectors in Karachi. (See Appendix 2 p.310)
Toronto
There is increasing recognition that chronic non-cancer pain (CNCP) is a multifaceted disorder
associated with considerable disability to the patient, and burden om the health care system and
society overall. The evolution of the organizational structures of the health systems in Toronto is
described in. These are discussed in terms of their impact on the delivery of comprehensive
chronic pain management services by health professionals in Toronto. This review is structured
as a case study of the availability of management services for people living with chronic non-
54
cancer pain within the Toronto health care systems. In order to close the gap between existing
CNCP care and the potential for optimizing CNCP care, significant barriers to this goal must be
addressed. There is an increasing need to integrate best practices and achieved benchmarks in
CNCP management in Toronto. The following review proposes to adapt approach to pain
management based on the recommendations of IASP and Declaration of Montreal according to
the viability, to accelerate the benefits for improved health, and strengthen Toronto’s health care
system for the delivery of chronic pain management (see Appendix 3 p. 334).
3.2. Comparison of Toronto, Kuwait and Karachi Case Studies:
This section of the thesis provides a reflection on the case study format, and an overview
of the individually studied three global cities. The rationale for case studies includes comparative
landscape, an overview of the current health care systems, and organizational structure of public
and private system. This basis leads to the understanding of availability of pain management
services and barriers that often impede access to care plans in each global city. The thesis uses
Kuwait, Karachi and Toronto as a laboratory in which to study the evolution and delivery of
CNCP services and management in a way that it comprehensible to international audience.
Although global cities are unique compared with the rest of their respective nations, they share
many characteristics when compared to other global cities; as they are the largest cities among
their nations, and are strategic headquarters for transnational corporations, international financial
institutions and health infrastructure. Reviewed literature suggests that these cities have
heterogeneous populations, and growing disparities in health services and access to health
services including CNCP services. The case studies shed light on general health services and
delivering for CNCP services. The findings of the case studies point to the challenge of
55
strengthening the chronic pain management in three global cities by considering the four sets of
inter-related issues:1) the burden of chronic pain that the healthcare system must prevent or
manage; 2) the effective programs, and services that the healthcare system must provide to meet
the needs of those living with chronic pain; 3) the health system arrangements that determine
access to and use of effective chronic pain management programs, services, and drugs; and 4)
the current degree of implementation of existing chronic pain management guidelines. An
integrated approach to pain management in all global cities is needed. This approach must cover
organizational structure, human resources, education and clinical services issues.
56
Figure 2: Comparison of Case Study City Demographics and Health System characteristics
57
3.3. Theoretical Development
Limited literature was available directly relating to CNCP management and services
globally, therefore tracing out of literature was relatively a hard task. One of the possible reasons
was that, this research work itself is of unique in nature and primarily tries to integrate research
areas like evaluation of CNCP services with the global cities concept. Thus, literature review
broadly covered areas such as CNCP, its management, health services, evaluation of these
services, and global cities etc. Reviewing literature found no theoretical or conceptual framework
for the evaluation of CNCP services. Therefore, scouring existing evidence and pertinent
research studies around CNCP for theories and analytic models that are relevant to the research
statements.
A theoretical framework refers to the theory that a researcher chooses to guide him/ her in
his/her research. While, a Conceptual framework cannot research in reference to only one theory,
or concepts. The researcher may have to combine both theoretical and from empirical findings
from the existing concepts in the literature (Imenda, 2014).
When I was developing a conceptual model for an evaluation framework, I read articles
closely and engaged within the literature on a deeper level. Distinguishing between CNCP
background literature and conceptual literature was useful as it helped to understand the
concepts. The theoretical literature review extracted theories that existed for CNCP management
and its assessment, and to what degree the existing theories have been applied, and tested.
58
Although speciality in pain management pain management has been a topic of increased
interest for at least two decades, developing countries have few initiatives in this direction, and
about the needs of evaluation, and treatment modalities with regard to pain. To date, no
framework has been provided that delineates the evaluation techniques that CNCP researchers
have at their disposal. The available literature suggested to me that a conceptual model needed to
be developed concerning the major system domains that needed to be described in evaluating the
ability of specialized pain clinics to effectively deliver care for people living with CNCP. The
universal burden of pain and the relatively recent discovery effective but specialized protocols
for diagnosing and developing care plans for people living with CNCP makes the need for
evaluating the performance of specialized pain clinics is a global priority. Yet several
international organizations have reported slow transformation of health systems towards making
access to specialized pain management practices a health system standard. Cities play important
roles in co-locating health care resources and mediating local access to global markets and
provision of globally recognized standards of care. Global cities with health systems that are in a
state of flux due to social and economic transformation provide a window on barriers to desired
health system transformation.
My systematic approach the review of current pain management literature and clinic
evaluation theory review assisted me in development of a conceptual framework for guiding
methodology development in his thesis. Intrinsically, the conceptual or theoretical framework is
the soul of every research project. Thus, in this project, I have developed a conceptual model for
developing an evaluation framework named as D-L Hybrid framework that assisted in
developing methodology for collecting descriptive data useful in the comparative analysis of
59
CNCP services provided by specialized pain clinics located in global cities. The next chapter
describes the whole process of the development of D-L Hybrid evaluation framework.
60
Chapter 4
Framework for Evaluating the Outputs of Specialty Pain Clinics Providing Care for
Chronic Non- Cancer Pain in Global Cities
Chapter 4 is submitted to Pain Medicine journal on April 13, 2016
61
Abstract (Max 145 words)
Background: Chronic non-cancer pain (CNCP) care have recognized effectiveness that is being
promoted internationally with limited success. Global cities play important normalizing role in
co-locating health care resources and mediating local access to globally recognized standards of
care. Documentation and evaluation of similarities and differences across different global cities
in pain clinic operations should lead to insights on how advocacy for CNCP management can be
enhanced.
Aim: To develop an evaluation framework to characterize pain management services in different
global cities with the goal of allowing documentation of barriers and facilitators of that
management globally.
Results and Conclusions: An evaluation framework (hybrid of Donabedian and Logic Model
[D-L Hybrid] designed to compare CNCP management practices in different global cities is
presented. The framework represents observable model elements of clinic Structure/Inputs and
Process/Activities and relates these to observable Outputs of clinic operations.
Key words: Chronic non-cancer pain, Evaluation, Pain management and services, Global cities.
62
4.1. INTRODUCTION
Chronic (persistent) non-cancer pain (CNCP) symptoms are associated with a wide range
of conditions (Chou, 2009; Stevenson, 2012; Elliot, 2002). The (Breivek, 2006; Lalonde, 2014;
Gatchel, 2013) and impact, (Blyth, 2005; Goldberg DS, 2011; Fanelli, 2016) of the disability that
accompanies CNCP make it an important public health issue. Numerous studies have highlighted
how clinical management of various CNCP conditions remain unsatisfactory despite its proven
capacity to reduce the burden of CNCP (Kahan, 201; Van Hecke, 2013). Globally, millions of
people with chronic, acute, and terminal conditions have found relief from pain through modern
medical interventions. Developed countries have disproportionately benefited from
improvements in access and use of clinical pain management interventions, while, the majority
of patients in developing countries have little or no access to therapies that could alleviate their
suffering from both acute and chronic pain (Size, 2007). There are generally no cures for CNCP
symptoms, so treatment options at present are directed towards care that reduces pain symptom
and improves the patient sense of wellbeing despite ongoing pain. The International Society for
the Study of Pain (IASP) has recognized this and is collaborating with the WHO in order to both
highlight the nature of the CNCP problem and to try to encourage dissemination of validated
strategies for managing CNCP symptoms (Annual Report: IASP, 2013).
As documented in the literature, chronic pain leads to decreased day-to-day activities
which further leads to stress, anger finally withdrawal socially (Bair, 2003; Apkarian, 2011).
When pain continues, a person fears activities that could cause further pain or injury. This
physical inactivity brings about negative beliefs about one’s self and further isolates them from
living a full and flourishing life (McCracken, 1993). Due to that isolation, a person feels
63
demoralized and resents the substantial changes that occur in their life as at the result of living
with pain. All of these things can exacerbate and maintain the chronic pain cycle (Apkarian,
2011; Gatchel, 2014).
Efforts to improve pain management have been made through the development and
dissemination of clinical and structural guidelines for comprehensive chronic pain management.
A key element concerning symptomatic improvement is monitoring of clinical processes and
patient outcomes (Younger, 2009; Malhotra, 2012). These efforts typically focus on only one or
two separate processes, such as pain assessment, patient education, or specialized pain treatment
recommendations. More recently, a need has been recognized for directly evaluating the impact
of these efforts on patient outcomes and process outcomes and how the one leads to the other
(Tauben, 2012). However, there is a lack of organizational evaluation frameworks designed to
assess efforts to integrate pain clinic structures and processes in order to improve clinic
operations and service outputs.
Jurisdictions (i.e., countries, states/provinces or specific health systems) differ
considerably as to how they administer and finance services for patients with CNCP.
Increasingly national economies are driven by the success of global cities located within national
boundaries. Global cities are hubs of media, finance, and other specialized services; they exercise
a powerful influence, not only on their own states, but also on the rest of the world (Gusamano,
2015). As a nexus for access to the fruits of advanced medical research and specialized care, they
also provide distinct channels for delivery of high-quality health services (Rodwin, 2002).
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Despite being general engines of growth, there are variations from city to city in how
development in certain domains lag or lead that of others, depending on local contexts. In many
global cities located within nations with emerging economies, integrated comprehensive pain
management services for patients with CNCP conditions are currently rudimentary in nature
(Soyannwo, 2010) as other types of services are prioritized. Nevertheless, some success has been
achieved even in limited resources settings (IOM, 2011). Economic development and prosperity,
both these situations should lead to opportunities for improving access to CNCP services in
global cities. A landscape analysis of the operations of pain clinics across different global cities
should provide insight into how advocacy for greeted CNCP care globally can be improved.
To initiate that process, a systematic framework for evaluation of the current CNCP clinic
operations and identification of barriers and opportunities for successful delivery of CNCP
management is needed. In this paper, we seek to create such a framework that can help in
comparing practices in different global cities, as well as documenting expected variations in the
delivery of CNCP management.
This paper aims to develop a documentation and evaluation framework that is a hybrid
between Donabedian (Donabedian, 1988) and Logic (Frechtling, 2007) Model approaches, the
D-L Hybrid Model. It identifies elements of healthcare structure and processes that can be linked
to output variables of service quality and expected improvements in the wellbeing of CNCP
patients. This D-L Hybrid framework identifies Donebedian-like structure and processes
elements deemed necessary for effective delivery of CNCP services. The framework further
identifies Logic model-like inputs emerging from interactions of those structures and processes
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and outputs associated with clinic operations that can be expected to lead to improvements in the
wellbeing of CNCP patients. The operations orientation aims to ensure that representation of the
clinic using the framework will be meaningful to those actors and agents responsible for
improving those operations. This study is part of a larger research project that uses a global cities
lens to explore opportunities and challenges for improving availability of CNCP services
globally (Lakha, 2016). Application of the framework is presented in subsequent papers
emerging from that larger study.
The paper begins with an introduction to the range of CNCP management availability and
variability in CNCP management between different global cities. It then discusses the concept of
evaluation theories for assessing healthcare system service structures and processes. This is
followed a description of the proposed D-L Hybrid evaluation framework and a look at
individual framework elements that can be considered in applying the D-L Hybrid evaluation
framework. Finally, there is a discussion of potential benefits of implementing the D-L Hybrid
evaluation framework.
Current Medical Practice as Related to Management of Chronic Pain in Global Cities
It has been estimated that one of every five persons experiences some type of chronic
pain in their lifetime (Gatchel, 2007; Schopflocher, 2011). However, complete systematic data
regarding the prevalence and management of CNCP at the global city level are lacking (Size,
2007). Global cities are inhabited by a heterogeneous population and serve as strategic
headquarters for transnational corporations, and international financial institutions. These cities
have the human and financial capital to provide access to a spectrum high-quality health services
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including pain care (Gusmano, 2015). Although, such services will likely differ from region to
region, many common opportunities and barriers to organizing, coordinating, and supporting
access to pain treatment services are also likely (Human Rights Watch, 2009).
Globally there are well recognized deficiencies in pain management practices. It is
estimated that every year, more than 2.9 million people suffering from moderate or severe pain
die without access to adequate pain treatment during end of life care (GAPRI: Access to essential
Medicine, 2013). The World Health Organization (WHO) considers morphine an essential
medicine for the treatment of chronic pain. Morphine is safe, effective, inexpensive, and easy to
administer in limited resource- settings (GAPRI, 2012). Recent studies from South East Asia
showed that patients are denied appropriate analgesics because of physician’s fear of opioid
addiction (Chang, 2005; Devi, 2006; Yanjun, 2010). Another study reported that around 50% of
global health system jurisdictions require their physicians to provide extensive documentation
regarding all patients who are on opioids (Pain & Policy Studies Group, 2002). This evidence
illustrates that despite economic development that has led to the capacity for delivery of pain
management services, there are likely to be challenges that limit patient access to those services.
Over the last few decades the goal of chronic pain treatment has shifted from a focus on
managing pain intensity to an emphasis on how those pain management services can improve
patient wellbeing and the quality of life of those living with pain (Jeffery, 2011). It is our basic
premise that an ability to act on these deficiencies and insights will likely vary between global
cities settings. Precisely how clinic directors and the health system are responding in those
different setting will provide insights into how recommendation can be adapted more widely.
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Many factors contribute to inequitable pain management, including myths and
misconceptions about opioid use and addiction, unequal access to services, and generally poor
delivery of healthcare services especially to the poor. It is widely recognized that care offered to
chronic pain patients are fragmented. Although multi-disciplinary coordination of pain
management services is recognized as a central feature of effective pain management, existing
multidisciplinary pain clinics in global cities of global south are rare or non-existent (Size, 2007).
Comprehensive multidisciplinary assessment and management programmes are costly and there
have been few well-designed evaluations with long-term follow-up (Breivik, 2013). In addition,
IASP survey showed that few of its members in resource-limited settings felt that they received
adequate knowledge in the understanding and managing of pain at undergraduate level. Less than
fifty percent of those members had specialized training in pain management (Kopf, 2010). In
order to highlight opportunities and barriers for improving the standard of pain management
services globally, there is a need to develop a framework for guiding service evaluation and
continuous quality improvement of those services. A focus on global cities where necessary
resources are often available will reduce the impact of resource limitations on observed
differences and similarities.
It is important to note that even though patients’ pain may differ in origin or type, once
pain becomes chronic, the modalities needed for treatment of those diverse patients are similar.
Nevertheless, each patient’s experiences and pain disability require an individualized approach to
CNCP management. One heuristic approach to this challenge is the biopsychosocial model, of
pain determinants. This model views pain as an interaction within sets of psychological, social
and biological factors that are unique to each individual (Gatchel, 2007) This approach
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emphasizes both CNCP pharmacological and non-pharmacological management with active
engagement of patients in implementing the care program.
Culture can influence the initiative a patient takes in asking for pain management. For
example, Asian culture values an indirect communication style; asking directly for pain
medication or asking for pain medication may be considered a sign of weakness (Mahloch, 1999;
Mailis, 2010). Active engagement of patients is key to the patient-centered perspective and to
generating new insights that supplement clinical experience and ultimately improve health
services and policy (Adams, 2011). A common source of frustration for chronic pain patients,
their families, and clinicians is the challenge of the identification and maintenance of treatment
or combinations of treatments that work for the person living with pain in a particular context
(IOM: Care of People with Pain, 2011). Therefore, pain management needs to take into account
bio-psycho-social factors; the role of the clinician is to assist the patient in becoming an active
participant in their own health care (Nay, 2012; Gatchel, 2013). Pain facilities vary in their
complexity of setting, staffing, and costs. There is no uniform method of accreditation or
certification of pain facilities. IASP has published guidelines for a set of desirable characteristics
of pain treatment facilities that would benefit patients throughout the world (Loeser, 1990; Sluka,
2009). Equitable access to proper pain medication in global cities can improve the quality of life
for all patients. Recent advances in standard treatment guidelines have emphasized
comprehensive integrative care that tries to engage the patient in actively working with the health
care team (Abma, 2009). Delivering health care to patients with chronic pain conditions, the
IASP association is strongly committed to the multidisciplinary approach of pain assessment and
management. A rehabilitative model that offers care from various disciplines is considered to be
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the “gold standard” for patients with persistent CNCP (and is recommended by the IASP) (IASP,
2010; Dobkin, 2006).
The terms multidisciplinary and interdisciplinary are generally used interchangeably,
though there are significant differences between these two terms. Multidisciplinary care is
provided by several specialties, which may lead to uncoordinated treatment and patient
management will not have cohesive approach to treatment (Turk, 2010). This leads us to believe
that professional specialties be specifically defined in their roles and goals which defines the
team membership being secondary while as the physician in charge is the leader. In contrast to
multidisciplinary care, members of interdisciplinary care typically would improve patient care by
playing complimentary role that are patient centered (Turk, 2010). Each discipline involved in
the interdisciplinary team is recognized as being able to access a unique set of knowledge and
distinct skills that supplement skills of other members of the team. Interdisciplinary teams share
accountability, responsibilities and complement each other in problem solving techniques (Turk,
2010). However, within interdisciplinary programs, there is a lack of standardization (De Meij,
2016; Artner, 2009) causing inconsistencies in the programs’ implementation due to structural
variation in planning of treatment, approaches being used in the frequency and amount of
treatment needed. These inconsistencies are reflected in variable treatment outcomes in the
literature (Thunberg, 2002). Several studies have demonstrated that team approaches are more
effective to pain management and it is also cost effective (Dobscha, 2007; Benjamin, 2008;
Dobscha, 2009; Lamb, 2010). However, these approaches are difficult to implement. As a result,
not all pain patients have the same access to participate in an interdisciplinary program that
works for them (IOM, 2011).
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An extensive list of guidelines and systematic reviews are available from reliable sources
for the management and comprehensive treatment of CNCP patients (CPSO, 2000; Chou, 2009;
Furlan, 2010). Additionally, methods for assessment of evidence based pain management are
clearly laid out (Manchikanti, 2003; Sessle, 2011; Speerin, 2014). The question remains whether
these guidelines are applied in ways that actually make a difference from the patients’
perspective (Bernhofer, 2011). Limited research has addressed the impact of adherence to
guideline on clinical outputs (Lesho, 2005). While the act of publishing CNCP management
guidelines by itself cannot ensure change in clinical practice, those guidelines provide a starting
point for identifying gaps and opportunities in the delivery of pain management services across
health care settings. They help define service quality goals to guide quality improvement efforts.
Such efforts require evaluation and monitoring indicators which measure both process and
outcome quality (Wobrock, 2009).
Adaptation of Health Services for Patients with Chronic Non Cancer Pain in Global Cities:
With the increasing prominence of and the complexity of integrated service models in
pain management, and the precarious nature of these arrangements (IOM, 2011), there is a need
for comprehensive conceptual framework for ongoing evaluation, to better understand the
functioning of the health care systems in global cities. Evaluation can be defined in many ways.
This section provides a number of examples of evaluation definitions. Evaluation is often defined
as an activity that judges worth, e.g.
…. the determination of merit, worth, or significance... (Scriven, 2007);
A course of action used to assess the value or worth of a program (Farell, 2002).
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Other definitions include the notion of improvable actions, e.g.
…a set of research questions and methods geared to reviewing processes, activities and
strategies (Kahan, 2005).
In a clinical setting, different types of evaluations are conducted at every stage. In many
cases, the desired outcomes that the program was established to achieve, might not be evident for
many years. This long trajectory can be addressed by identifying meaningful and measureable
output-oriented events that are instrumental in generating desired long-term clinical outcomes
and other long-term goals. Chronic pain clinic evaluation is particularly challenging because
different clinics address a diversity of issues, possible solutions, and include multiple
stakeholders. In general, models of chronic pain management, such as creating multidisciplinary
team management protocols, simply establish components of services independently of any
evaluation framework (Flor, 1992; Chen 1996; Luk, 2010; Pergolizzi, 2013; Kaiser, 2013;
DeMeij, 2016). Therefore, there is a need to establish an appropriate framework to support the
ongoing monitoring and evaluation of evolving CNCP clinical practices.
4.2. FRAMEWORK DEVELOPMENT:
The proposed D-L Hybrid evaluation framework is based on existing models, empirical
evidence of indicators, and strategies implemented in previous evaluations of care systems. A
comprehensive search process of published and unpublished “gray” literature (e.g., from
websites) from January 1956 to February 2012 was used to discover this information. Emphasis
was placed on reports describing a) evaluation of the effects of pain management on quality of
care (Dufault, 2000; Wells 2008; Kim, 2013), as well as b) evaluation and implementation
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models specific to multidisciplinary and comprehensive pain management (Gatchel, 2006; Turk,
2007; Schatman, 2012).
Numerous studies related to services document that pain care is inconsistent and
inadequate (Wells, 2008; Carr, 1998; Wolfe, 2000; Jain, 2013). Gordon and colleagues (Gordon,
2002) reviewed 20 quality improvement studies conducted between 1992 and 2001. They
reported high satisfaction with pain management in 15 studies, despite many patients
experiencing moderate to severe pain during hospitalization. This leads us to believe that patient
data should be cautiously interpreted. Recently, a systematic review assessing the effects of
Multimodal Pain Therapy (MPT) for chronic pain found that the current lack of standardization
in outcome domains interferes with evidence-based decision (Deckert, 2015). Again this
illustrates the need for rich descriptions of practices in diverse settings presented in terms of a
normalizing framework so that best practices can be understood in the context of realistic
constraints.
In an effort to further develop this evaluation framework, we additionally considered our
own clinical experience and research conducted with chronic pain patients, which helped define
an initial set of output indicators to be measured. Iterative discussions within our research team
(which contains both health services researchers and pain researchers) were carried out about
potential output measurements. As a first pass we focused on indicators likely to be used by a
pain clinic manager or director to describe what goes on in their facility and why they think
identifiable processes and the structures supporting those processes will lead to desired clinic
outputs. In this framework evaluation of each element makes an independent contribution to the
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overall evaluation of the services delivered by pain management clinics that is empirically
supported by the criteria.
Our goal was to create a framework that provides tangible evidence for justifying
investment of resources into programs that benefit CNCP patients. More importantly, the
framework should be seen as useful in guiding clinic management by directing always limited
resources towards clinical programs that work. In addition, the D-L Hybrid evaluation
framework can provide useful information of the pain management program activities of interest
to a variety of audiences, such as state and local officials, policy makers, patient advocacy
groups, and pain association. Even preliminary results should be useful in identifying operational
problems supporting service customization and reflexive practice (Blamey, 2007). Finally
pooling of data gathered using a common framework across different peer global city settings
should help identify opportunities and motivate the marshalling of global support for increased
development and funding for the CNCP program improvements globally.
4.3. Specifying Models for Conceptual Framework:
The major constructs of proposed framework D-L Hybrid evaluation framework are
derived from two existing evaluation models i.e. Donabedian Model (Donabedian, 1988), and
Logic Model (Frechtling, 2007). There are three key constructs that are integral to D-L Hybrid
evaluation framework, namely structures and processes from Donabedian and output from Logic
model.
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The Donabedian Model highlights a systems-level perspective on the factors of
healthcare quality (Donabedian, 1988), based on three components: “structure –process –
outcome” (SPO). Each component has a direct influence on the next one. Structure is defined in
this model as the set of professional and organizational resources associated with the provision of
care. Process refers to the tasks and decision embedded in care. Outcomes are defined as the final
or semifinal measurable impacts of care. The evaluated outcomes guide changes in structure and
processes needed for continuous internal quality assessment.
The same three levels of analysis of Donabedian Model are also part of standard Logic
models (Frechtling, 2007), used for external quality auditing of WHO programs. However, Logic
models also include objectively definable input and output variables. A Logic model starts with
the category of “inputs” that include measures of resources, and stakeholders. “Outputs” include
specified controlled acts that are delivered as part of the pain clinic activities. The goal is to
make sure that the components of the inputs and outputs are easy to identify and mechanisms for
auditing those determinants of desired outcomes are made unambiguous and easily measureable.
This should be true regardless of whether the outcomes are long-term or short-term outcomes.
In order to identify the limitation of both models, a critical analysis of two models was
carried out. The Donabedian model assumes that the component “process” include all activities
related to patient’s treatment. So, this model only defines a process, which could be called a
"treatment-process” (Rais, 2013). It assumes that the overall organization of the health institution
is optimized and functioning in the background. As a result, there is little place for incorporating
measurement of service delivery management into the evaluation framework. Also, it assumes
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that, if the infrastructure and work environment are adequate, and human and material resources
are allocated appropriately, high quality of care is inevitable and always lead to the desired
outcomes. Disadvantages of Donabedian model include the difficulty in establishing the actual
causal relationships between measured structure, process, and outcome variables (Donabedian,
2005). In contrast, the Logic Model allows the planners to make program design decisions that
will influence the trajectory of the evaluation. Again, it assumes that provided identified outputs
are in place and adequately match pre-established protocols, so that expected outcomes are
inevitable. A major disadvantage of a logic model is that there is no place for accounting for and
reflecting upon unintended or unexpected outcomes: positive, negative, or neutral. Also, the
evaluation considered in both models appears to be focused on specific instances rather than
developing a normative framework for facilitating comparison of experiences across diverse
settings.
An evaluation of clinical settings that only focuses on outcomes does not provide a
holistic view of the many interacting determinants of the desirability of those outcomes. Such
holistic views might be easier to achieve through determining the effects of structures and
processes on more immediate outputs. Evaluators can ascertain why project output turned out as
it did and explore barriers and opportunities for re-design of practices to drive ongoing
improvement. Evaluative research in CNCP provision typically focuses on either patient
outcomes or provider perceptions of the process. To understand how CNCP clinics function and
to make informed recommendations, requires a systematic approach. Structural features also
need to be considered to understand the environmental characteristics that enable or impede
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CNCP clinic processes, as the process level only captures the organization’s operations. No
evaluative framework exists for explicitly examining the CNCP in this context.
In this study, we have proposed an overarching structure for assessing services for CNCP
management that can be applied globally to a system evaluation localized within a city
recognized as being economically significant in a global sense. This structure allows for internal
and external ongoing evaluation. The pragmatic approach and flexibility of this proposed D-L
Hybrid evaluation framework will increase likelihood of evaluation results being responded to in
an ongoing manner.
4.4. D-L Hybrid Evaluation Framework Building Blocks:
The “building blocks” of measurable variables for evaluating and documenting CNCP
care services using the D-L Hybrid evaluation framework can be organized into Structure/Input
variables and Process/Activities variables that in turn influence Output variables (Table 1). Also
identified in Table 1 are measurable output variables that can be loosely organized under heading
of: (1) Infrastructure Utilization; (2) Clinical Service Delivery; (3) Research; and (4) Education.
The framework identifies traits associated with structure/ input (i.e. hierarchy of services,
human resources (including types, roles and responsibility, training), type/ size of organization,
infrastructure, funding mechanism, facilities and equipment, geographical distribution,
availability of personnel) and processes/activities (such as care delivery, use of clinical guidance,
referral pathways, discharge and continuity of care, management of waiting list, communication,
coordination of care). Both structure and processes interact in a dynamic and evolving manner.
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The interactions between structural and performance traits may ultimately lead to outputs (i.e.
infrastructure utilization, clinical services, research and education) from the hospital
administrator perspectives (Figure 3).
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Table 1 describe the “Building Blocks” of D-L Hybrid framework for evaluating and documenting CNCP
care services. Also, identified measurable output variables that can be loosely organized under heading of:
(1) Infrastructure Utilization; (2) Clinical Service Delivery; (3) Research; and (4) Education.
Table 1: Dimension of Evaluation in the D-L Hybrid framework
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Figure 3 : D -L Hybrid Evaluation Framework
Figure 3 explains the interactions between structural and performance traits that ultimately lead
to outputs (i.e. infrastructure utilization, clinical services, research and education) from the
hospital administrator perspectives.
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4.5. Framework Description
In developing the D-L Hybrid framework, the elements of healthcare structure and
process were consistent with our goal of being monitored and assessed simultaneously with the
output variables in establishing clinic system determinants. The D-L Hybrid framework specifies
the interaction between the structure and process and their interdependent relationships.
Additionally, the results are likely to be generalizable. These results should help in action
planning and implementation of system improvements or adaptation to ongoing change in
specific pain management settings. The D-L Hybrid framework identifies the opportunities or
barriers for planning in clinical settings and it also has a potential to effect the evaluation of
output that connects to the loop of feedback. It is important to examine the external factors that
affect output and assess local context of the practices. These factors will clarify the practices
“niche” and the assumptions on which performance expectations are set. In this section, we
describe the constructs that constitute the D-L Hybrid framework, without elaborating how they
should be assessed. Assessment methods can be selected according to the resources of the
researcher and to the investigation at hand.
STRUCTURE:
Structure, can be thought as not only the physical setting in which the care takes place, but
also as the organization of care and the qualifications of the care providers. These structures can
include human, financial, organizational, or systems resources in any combination that are used
to accomplish specified activities or processes occurring within the clinic. For the D-L hybrid
framework, structure refers specifically to those stable features that influence process and output.
Pain clinics are inherently different and each component of the stable structures should be taken
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into consideration. Examples include: ratio of doctors, nurses and other staff to CNCP patients
and to each other, operating hours of a clinic, physical layout of the clinic, and so on. In the D-L
Hybrid framework, it is assumed that guidance coming from international organizations
concerning structure and technologies used for the assessment will influence how that structure
is imagined and developed by clinic management.
PROCESS:
Process is synonymous with interventions deployed to secure the desired changes or
results. Many potential causal pathways will link structure and process, so that, when combined
lead to outputs likely to be beneficial for chronic pain patients. Activities or processes within a
pain practice contain two major components: 1) what is done and 2) how it is done. Evaluation of
process can focus on either component; however, the greatest impact for evaluation is when both
are considered together. A process provides a sequence of events designed to lead to a particular
output. Review of the steps and their sequence in terms of who performs each step, and how
efficiently the process works, needs to take into account integrative purposes a clinic may aspire
to. For example, processes may be designed to provide care provision that is evidence-based;
demonstrate cultural competence; improve patient wait times; build staff commitment and
loyalty; support interdisciplinary approaches to care; reduce time taken from diagnosis to
treatment etc.
OUTPUT:
Outputs are characterized as intended observable changes resulting from program activities.
Pain clinics typically have multiple, sequential opportunities and barriers across the complete
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program. Examining structure and process measures is important because they ultimately can
affect the output from the viewpoint of the provider and hospital administrator. Also,
organizational procedures (documentation, ethics, protocols etc.), culture, and workflow all have
a direct effect on provider activities and their outputs. For example, research is an intrinsic
activity and the reports generated by the research and technology develop through it is an output
of that activity.
FEEDBACK LOOP
An assessment feedback loop between the interaction of structure and process and their
impact on operational outputs is illustrated in Figure 3. Representing the feedback loop within
the framework allows dynamic and reflective planning operations to be represented. Once a
change to the structure and process is implemented, a setting must determine whether it achieved
the intended output and, if not, what other changes could be considered. If the output is achieved,
the practice could determine how to produce an even better output or achieve it more efficiently.
Instruments and Data Structure
In terms of application, the D-L Hybrid framework assumes the employment of mixed-
methods research tools. This implies seeking (or collecting) multiple sources of data to consider
the different perspectives, structure, process, and output levels operating within clinical facilities
providing dedicated CNCP care. At the structure level, data will be obtained from pain clinic
leaders, administrators and through website review. Data collection at the process level could
involve documentation by members of the pain clinic providing care, and through the
observations of the provision of care. In order to gain broader insight into the study, mixed
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method reinforces comprehensive understanding of the outcomes of the study (Creswell, 2013;
Johnson, 2004). In comparison to any one method, mixed methods have proved to give
triangulated and validated findings. The results derived from mixed methods are more
generalized.
A semi-structured questionnaire can examine different aspects of the CNCP care
provision. For example, this could be a strategy to examine or document background and
characteristics of the institutions and key informants; the organizational structure and clinical
activities of the specialty pain care clinic; strength and barriers/difficulties in operationalizing
CNCP care. Experts in comprehensive pain care as well as different pain specialists can be
consulted during the preparation of the questionnaire for the content validity. The example
presented here illustrates how we will use the D-L Hybrid framework to inform our research.
Characteristics of specialized clinics providing CNCP management will be measured by surveys
with specialists in charge of these services. Questions will relate to: availability of resources (e.g.
staff composition and space facilities, type of funding for services etc.), clinical activities (e.g.
treatment modalities offered or available within the institution, waiting time etc.), involvement of
pain clinician (e.g. teaching and research activities etc.), as well as barriers/ difficulties in
providing CNCP management. Application of the D-L Hybrid framework will ensure complete
coverage of desired elements and will assist in analysis for mapping individual factors relative to
one another in CNCP clinical settings. The framework is intended to be used to organize data
from multiple sources i.e. observation, survey, interview instrument, to reveal the dynamics of
the relationships among the framework elements. These are summarized in a subsequent
manuscript.
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Application of Framework in the CNCP practices.
Application of D-L Hybrid framework applies to both the structure and the process elements
in place, and can be measured through outputs at the provider or system level. It specifies the
predictor variables that should be captured in order to evaluate the output of CNCP clinical
settings, but it does not specify how these variables should be measured. Researchers may prefer
intensive qualitative studies to produce a rich and in-depth understanding of a particular
situation, whereas in other cases, researchers may use data available from the system itself. The
D-L Hybrid framework focused on structure, process and output elements of the clinical service,
has served as an organizing principle for the assessment of the functioning of CNCP clinic in the
three global cities in our project. The final framework iteration will represent a combination of
empirically-supported criteria, with each element making an independent contribution to the
description and assessment of the chronic pain management services. The D-L Hybrid
framework provides a closer, detailed picture of operations of CNCP clinic settings, in
comparison to the Donabedian and Logic models. This detail can enhance efficient work plans
that can be used to manage CNCP clinics. Evaluation frameworks create an opportunity to share
information about what works with similar rank or different rank of global cities. By providing a
normalizing frame of reference the D-L Hybrid framework can allow practitioners and health
system developers to reflect on their efforts to improve pain management services in a way that
can be shared globally with other jurisdictions. Other CNCP clinic setting of similar size, in
similar environments, will be able to apply the same evaluation processes and produce
comparative results.
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4.6. DISCUSSION
Evaluation and feedback plays a key role in developing organized systems of care
(Xyrichis, 2007; Ferris, 2007). Although critical, evaluation can be costly in terms of staff time
and resource expenditure. As a result, it is often deferred in favor of using limited resources in
providing care (Brock, 2006). This may explain why the literature is lacking in care delivery
research in chronic pain management (Nelligan, 2002). CNCP management is proving to be a
concern globally for better service management and that take into account the complexity of
these initiatives. As there is no framework to evaluate explicitly the current system of care in an
organized manner. This manuscript proposes an across-the-board approach for examining
chronic pain clinics that can be applied to evaluation of determinants of the quality of CNCP care
delivered in specialty clinics. The results emerging from application of this framework would be
useful to the system planners, and promoters of integrated chronic pain management facilities.
This present study is an initial effort to conceptualize the system structure, process of care, and
output of domains for CNCP management. The proposed D-L Hybrid framework focuses on
clinician, pain management leaders, and their involvement in clinical practices as well
constraints and strength of their institution. The D-L Hybrid framework has the flexibility to
include contextual factors (diverse population, national guidelines, and local regulation) to
capture the unique features of the CNCP clinical services. Many of the elements derived from
these constructs overlap, indicating their interdependence.
The D-L Hybrid framework supports two aspects of CNCP services evaluation: 1)
communicating the value of the clinical services to others (accountability) and 2) improvement
of clinical services. The framework is built around features of importance to pain facility
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functioning, with provider and patient contexts. Evaluation generated by D-L Hybrid framework
can determine the extent to which CNCP clinic objectives are met. This increases awareness, and
helps policy makers in planning. Many of the considerations discussed here, including the D-L
Hybrid framework, could also be suitably applied to the examination of integrated institutional
systems and services for the symptomatic management of other chronic diseases and collection
of symptoms. Armed with this information the administrator will be able to meet accountability
requirements and present a logical argument for guiding investment in program development.
The D-L-Hybrid Framework and Global Cities
The framework is intended to be used beyond a specific clinic. Pain clinics developed
explicitly for the management of CNCP are currently operating in many global cities within a
wide variety of local contexts i.e. diverse population, environmental education of general
population. The D-L Hybrid framework can be used to compare with distinctive cultures and
economies that are reflected in how health systems function beyond the clinic and a clinic’s
capacity to deliver outputs expected to have long term benefits for their patients. In this way the
framework can be used as discovery tool for generating data that can help guide adaptation of
international recommendations so that they can be more effectively applied to the needs of a
wide diversity of individuals whose pain is modified by a wide diversity of bio-psych-social
factors. Globally, there are large knowledge gaps in the description of clinical services of CNCP
structure, process and output. Where information is available, it demonstrates a picture of great
need. Access to care and quality of care must be improved and economic efficiencies gained.
There are strong indications that current efforts to educate and train leaders, decision makers, and
clinicians about the optimal CNCP management in diverse population in context are failing to
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meet this challenge. However, evidence shows there is an appetite for improved approaches to
address that gap (Lakha, 2016). It is hoped that this project report provides a first step in
providing a better understanding of the dynamics of change and a foundation for future work to
build an understanding and culture of successful change within the chronic pain management
services The D-L Hybrid framework is designed to assist evaluation of determinants of health
care practices quality, and is illustrated with an evaluation of quality determinants of CNCP
management clinic services rather than to study outcomes of patient satisfaction and actual care
improvement. This makes it appropriate for comprehensive evaluations in clinics located in
secondary or tertiary care settings. It has been noted that comprehensive evaluations do not do
justice to systems in development or implementation (Friedman, 2005b). Whether it is a one-
time snapshot of the pain facility or the implementation of an ongoing surveillance mechanism,
in order to sustain a pain facility management, it is suggested to start small so the process
becomes manageable. Finally, this framework is in the process of validation, and it is possible
that additional dimensions could be determined to be useful.
4.7. CONCLUSION
This paper proposes a general framework for conducting ongoing evaluations of available
systems. It characterizes expected outputs of CNCP patient care in light of accessible
infrastructure and clinical care provided by health care professionals in the global cities. The D-L
Hybrid framework does not specify that the method used for evaluation should be quantitative,
qualitative, or mixed but specifies the domains and constructs that should be evaluated. Research
has found that applying a variety of methods produces rich qualitative data that can guide
interpretations and work aimed at improving outcomes. An evaluation approach that integrates
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perspectives from health services research and clinical information has the potential to capture
the implementation of CNCP management. This framework is a foundation to guide evaluation
of appropriate strategies for optimal care of pain management that meets CNCP patients' needs
and expectations.
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Chapter 5 -Methodology-Qualitative and Quantitative Descriptive Data
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Collection of Qualitative and Quantitative Descriptive Data
Although, methodology sections traditionally appear towards the initial part of a doctoral
thesis, in this thesis it is incorporated after presenting the framework chapter. This is because the
methodology emerged from the D-L Hybrid framework. This chapter describes in detail all the
steps taken to successfully complete the study. This thesis strictly follows ethical principles,
from the planning stage to the completion.
5.1. Research Approach and Rationale
Background:
There are many methodologies from which to choose when approaching a doctoral thesis.
The methodology used in this thesis is derived from the philosophical tradition of Pragmatism
(Creswell, 2013). Pragmatists, as the word name would suggest, adopt a practical approach,
albeit with varying emphases. In its broadest and most familiar sense, "pragmatism" refers to the
usefulness, workability, and practicality of ideas, policies, and proposals as criteria of their merit
and claims to attention. A practical and more appropriate connotation of the term in which any
exercise of power in the successful pursuit of getting specific objectives is called being
"pragmatic"(Ridling, 2001).
The American school of pragmatism was initiated in the 19th century by C.S. Peirce and
developed by William James and John Dewey (Murray, 2013). James argued that there is no 'end
to enquiry' and that we ‘must bring out of each word its practical cash-value, set it at work within
the stream of (our) experience’ (James, 1995, p.21). 'Truth,' especially when it comes to
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intangible definitions and somewhat vague concepts, becomes a fluid and almost negotiable
commodity (Belshaw, 2011).
The pragmatic approach to science involves using the method which appears best suited
to the research problem and not getting caught up in philosophical debates about which is the
best approach. Pragmatic researchers therefore grant themselves the freedom to use any of the
methods, techniques and procedures typically associated with quantitative or qualitative research.
They recognize that every method has its limitations and that the different approaches can be
complementary. This pragmatic approach is used to give credence to the aim, rationale and
methodology used while conducting research for this thesis.
5.2. Research Design:
A mixed of methods approach was used for this study. According to Jackson & Gillis
(2003), “qualitative and quantitative research should be seen as complementary to one another”
(p. 137). In the health sciences, mixed method study designs have become increasingly popular.
One of the benefits of the mixed methods study design is its ability to carry out participant-based
research. Researchers are able to integrate the individual perspectives and experiences of their
participants when utilizing both qualitative and quantitative methods (Tashakkori, 2003;
Townsend, 2010).
My research study began with a descriptive quantitative component to establish general
information about key informants and pain clinic institutions in the global cities, i.e. Kuwait,
Karachi and Toronto. A qualitative component followed based on a semi-structured guided
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interview to explore key informants’ experiences of and reflections on delivering services for
CNCP. The qualitative interview was concluded with a request to the key informant to identify
the three top barriers to the delivery of CNCP from their own practice. Finally, key informants
were provided a list of barriers to delivery of CNCP identified in the published literature (Lakha,
2016; Sapir, 2010). Key informants were asked to rank these barriers on the scale of 0-4.
The qualitative component was the primary focus of this study. The quantitative data
from key informants engaged in the delivery of CNCP management complements the qualitative
data (Tashakkori, 2003, p. 197-198, 214). As the primary focus, the qualitative component
emphasized the importance of the key informants’ experiences for the delivery of CNCP in the
global cities.
5.3. Methods
Inclusion and Exclusion Criteria:
Criteria for inclusion of a pain specialist as a key informant in the study was his/her
involvement for more than 6 months in the delivery of CNCP management services, prior to
completion of the questionnaire in one of the studied global cities. Key informants who provide
care exclusively in paediatric or cancer pain departments were excluded as the focus of this study
was on management of general CNCP.
5.4. Recruitment of Participants
Local collaborators who networks with clinical leaders in the targeted locations provided
contacts for the key informants for recruitment to the study (HB, Kuwait; MA, Karachi, AM,
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Toronto). A convenience sample of twelve key informants was established. Follow-up letters,
telephone contacts and personal clinician-to-clinician conversations were used to maximize their
retention in the study.
All key informants in the pain clinics were provided with a study information sheet and a
paper copy of the questionnaire. In the first section of the questionnaire, the participants were
asked if their department offered services for the treatment of 1) acute pain, 2) chronic non-
cancer pain, and/or 3) cancer pain and/or 4) paediatric pain. Eligibility included only those who
reported being involved in the delivery of CNCP management services in the 6 month prior to
completion of the questionnaire. Participants were encouraged to express any questions that they
had during the completion of forms. After participants agreed to be part of the study, the
collaborator presented the recruitment letter and obtained a signed copy of the informed consent
letter (Appendix 5) before being contacted by principal investigator (PI) Ms Lakha. All key
informants read the consent form thoroughly before signing it.
5.5. Source of Key Informants:
Our key informants were selected based on convenience and being part of existing pain
clinics in the global cities. The pain clinics and their host institutions were either privately run by
non-governmental organizations or run directly by the government. In this thesis, a chronic pain
clinic is defined as a facility staffed with health care professionals who are specialized in the
diagnosis and management of chronic pain symptoms. These pain clinics had to be an
established pain management unit, and/or a division/department of an academic health care
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center. The clinic had to be recognized as being responsible for specialized services for the
diagnosis and management of patients with chronic pain.
We interviewed pain management clinicians in the leadership roles of specialized pain
clinic located in Kuwait City, Karachi and Toronto. Key informants were involved directly in the
delivery of clinical CNCP management services. Of the 12 key informants, eight males, four
females;, There were four key informants from each global city, and one from each clinic. The
participants were engaged in the provision of CNCP services at both public and private settings.
For the study, participants were asked to reflect on their experiences with public academic
setting only.
5.6. Study Questionnaire:
The principal investigator (PI) developed the study questionnaire. Input and feedback
from the committee in comprehensive pain management as well as from study collaborators were
taken into consideration during the preparation of the study questionnaire. It was vetted by
Toronto based experts in comprehensive pain management and was pilot-tested in one hospital in
Toronto. Based on the feedback, some minor changes were made to the language and format of
the questions.
The questionnaire was designed to gather information about pain management and pain
services in terms of structural elements, clinical care processes and barriers of the system under
study (Appendix 6). The questionnaire sections were rooted in questions found in well-
established research instruments (Donabedian, 1988; Frechtling JA, 2007). The earlier chapter of
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the evaluation framework provides a description of the constructs and domains (outputs) that
constitute the D-L Hybrid Framework that were used in this questionnaire (See Chapter 4). The
questionnaire was in English for all the sites.
There are three different parts of the questionnaire. Part I consists of the form that solicits
background information regarding the demographics and personal information of the key
informants. It also extracts information about the institutions and the pain clinics associated with
it. Key informants were encouraged to fill out this part of the form (Appendix 6).
Part II covers the organizational structure and clinical activities of pain services in each
pain clinic. The interviews in this section were semi-structured one-on-one interviews. The
interview guide was carefully constructed. The format of interviews included both semi
structured and open-ended questions. This part of the Questionnaire consisted of four segments
of D-L Hybrid Framework (Segment A: Structure; Segment B: Clinical Services; Segment C:
Educational Activities; Segment D: Research Output) (Appendix 6). Only the first segment of
the interview posed questions that specifically targeted the description of the organizational
structure of CNCP services and management. Each of the remaining three interview segments
explored personal experience of delivering the clinical services of CNCP and their engagement
at the pain clinic. The questionnaire was used to increase understanding of each participant’s
personal experience on delivery of clinical services of pain. Often completing these forms and
interview prompted participants to spontaneously reveal additional details of their clinical
experiences or barriers to it.
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Part III consists of barriers/ difficulties in managing CNCP. It has two sections inquiring
about a) the top three barriers this section sought single-phrased responses to the open-ended
questions regarding key informants’ perceived three top barriers; and b) comprehensive barriers
this section provided a list of barriers related to infrastructure, clinical services, education, and
training developed from a systematic review of the literature (Lakha, 2016). Key informants
scored their perceptions of the magnitude of their experience of those predetermined barriers
using a 4 points Likert scale (0 = not a barrier; and ++++ = extreme barrier) (Appendix 6).
5.7. Practice interview:
I conducted practice interviews using the interview guide with non-participants. This
provided an opportunity to test audio-recording software, develop interviewing skills, and test
and refine the interview guide. It also provided an opportunity to reflect on the involvement that
would be required for conducting interviews. Through the interview practice, it was concluded
that conducting interviews would provide more involvement and interaction with the key
informants.
5.8. Data Collection:
Upon agreeing to participate in the research, and based on their availability an interview
was scheduled for each participants. The pain management clinicians in charge of CNCP
services filled out the first part of the questionnaire. Key informants were asked to provide the
following information: age, gender, country of origin, education, medical specialty, and years of
practice. Since as participants filled the questionnaire in front of the PI, their frequent,
spontaneous field notes about their pain clinics were recorded and later proved useful.
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Subsequently, individual semi-structured interviews were conducted in a consulting location at
the pain clinic. Permission to tape-recording the interview was obtained from each key
informants. The interviews lasted from 45 to 60 min. The interview guide consisted of core
open-ended questions to allow participants to explain their own viewpoints and experiences. The
open-ended questions required more thought and consideration from participants. Open-ended
questions promote a more conversational interview style. The four segments contained in the
interview (Segment A: Structure; Segment B: Clinical Services; Segment C: Educational
Activities; Segment D: Research Output) (See Appendix 6), were well responded by the
participants. The first segment posed questions that specifically targeted the views on the
organizational structure of CNCP services and management. Each of the remaining three
interview segments explored personal experience of delivering the clinical services of CNCP and
the key informants’ engagement at the pain clinics. Reflective comments, impressions, or any
behaviors or gestures that stood out during the interview were recorded, when possible in the
field notes. The key informants were asked to describe the principal barriers of their pain
program and to explain their own experiences and perceptions on the barriers that affected taking
action on the services of pain management. Along with the open dialogue in the interview key
informants were asked to quote “state three principal barriers you face while delivering pain
management services at your clinic”. Subsequent to their identification of the three barriers, a
comprehensive list of perceived barriers, extracted from a review of the literature, was given to
the key informants to be ranked on 0-4 Likert scale.
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5.9. Data Analysis:
The concurrent analysis of both quantitative and qualitative data were used. For Part I of
the questionnaire, descriptive statistics were provided to describe the general characteristics of
the institution and key informants.
For Part II, the main instrument used was NVIVO software, for data analysis. This study
uses interpretive description methodology. Interpretive description is a qualitative inquiry
approach that was established in 1997 and is most suited to research questions that originate
from the applied clinical fields (Sandelowski, 2000; Thorne, 2008; Thorne, 2009). Rather than
description alone, interpretive description explores the meanings and explanations that are within
the descriptions with an aim to answer questions that are relevant to the clinical discipline of
interest (Thorne, 2004). The ultimate purpose of interpretive description methodology is not to
theorize, but rather to illuminate insight (Thorne, 2008, p. 169). Research inquiry that is
conducted using interpretive description methodology will, most often, result in a conceptual
description or thematic summary (Thorne, 2008). It should also build on a scientific basis or
some level of existing knowledge (Thorne, 1997; Thorne, 2004).
According to Braun & Clarke (2006), thematic analysis is a “theoretically flexible
approach to analyzing qualitative data” (p. 77). Thematic analysis involves interpreting the data
by taking an active role in engaging with it. The process includes six phases: (1) becoming
familiar with the data, (2) using initial codes, (3) looking for themes, (4) reviewing these themes,
(5) refining the themes, and (6) producing the report (Braun, 2006, p. 87).
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In this research, I followed the six phases outlined by Braun & Clarke (2006). All
interviews were transcribed from audio recordings and then entered as text and coded using QSR
NVivo Software (QSR NVivo, 2012). I re-familiarized myself with the data by listening, reading
and re-reading transcription of each interview (Braun, 2006). The qualitative analysis was
structured around the components of the guided interview (Segment A: Structure; Segment B:
Clinical Services; Segment C: Educational Activities; Segment D: Research Output). For each
segment topic, data were grouped according to Krippendorff’s analytical technique of clustering
to identify phrases and sentences that shared same characteristics (Krippendorff, 2012). Codes
were organized into categories then into overarching themes.
While the PI was responsible for the analysis of the qualitative transcripts, consultation
about the appropriateness of the codes and categories with the committee member and supervisor
was under taken. The interpretations that emerged were the product of many hours of thought
and intellectual inquiry. Regarding trustworthiness of the themes, credibility was established
through process, described below. The analysis was finalized by identifying several themes that
emerged to describe the delivery of clinical services and barriers regarding pain management in
the global cities.
In this study, I mapped the themes onto the components of D-L Hybrid framework to
assess it suitability a comprehensiveness for the evaluation of delivery of services in the pain
clinics. Here, the task was to determine whether there was a gap or issues that could not fit in the
conceptual framework. This mapping exercise in this study, the D-L Hybrid framework was
constructed to describe how clinical leader or pain specialist/ manager can characterize pain
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management services in different global cities with the goal of allowing documentation of
barriers and facilitators of that management globally. It includes the description and expression
that how these lead clinicians experience the delivery of services of pain management in their
own clinic. This conceptual framework is presented in Chapter 4; it is constructed from relevant
literature (see Fig 3).
For Part III, comparisons of barriers across the sites was done using contingency tables.
The magnitude of the perceived barriers in managing and treating the CNCP patients were
computed, using a 4 points Likert scale. A summation of responses associated with each barrier
listed was calculated for all key informants from each global city. The mean scores were then
recorded as follows: mild barriers (0-2), moderate barriers (>2-<3), and severe barriers (3-4).
5.10. Trustworthiness of Data:
Qualitative research is evaluated by its authenticity or “trustworthiness” while
quantitative research is based on reliability, validity and evaluation of the results obtained.
Lincoln and Guba (1985) gave this term “trustworthiness”, and it represents several concepts: (a)
credibility, (b) transferability, (c) dependability, and (d) confirmability. A description of each of
these concepts is included in the following paragraphs.
Credibility:
The authenticity, or credibility, of research in a qualitative study is comparable to the
concept of internal validity in quantitative research. Lincoln & Guba (1985) and Miles &
Huberman (1994) proposed that research be evaluated on three basic questions: (a) Does the
conclusion justify the studied research? (b) Does the conclusion sufficiently describe research
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participants’ perspectives? and (c) Does the conclusion authentically represent the studied
research? According to Lincoln and Guba (1985), triangulation is the substantiation of results
with alternative sources of data. My advisory committee members were experts in the field and
were utilized as alternate data source. Therefore, I relied on triangulation and these member
checks to enhance credibility. Additionally, sharing results with collaborators served as a method
to enhance the credibility of this study’s.
Transferability
Quantitative studies is reliant on external validity, while transferability pursues data for
interchangeableness with and within other contexts (Miles, 1994). In this study, I sought to
enhance transferability by providing an abundant, rich description of the contexts, perspectives,
and findings that surrounded the key informants’ experiences. By providing adequate detail to
draw a well-defined context, I allow readers the opportunity to decide for themselves whether the
results are transferable to other circumstances. In addition, the major themes in the study are
consistent with the recent survey of International Association for the study of Pain (IASP,
2011b).
Reflexive Journal
I began a journal that I used throughout the research study. The purpose of this journal
was to record the activities, ideas and decisions I made during the research process and feedback
of my supervisor and advisory committee members. My intention was to use the journal as a
master calendar of events as I made interview appointments, set deadlines, and identified the
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stages of my progress. Additionally, the journal became my personal diary of notes regarding my
own perceptions, feelings, and interactions with participants.
Dependability
Quantitative research depends on reliability, whereas in qualitative research dependability
refers to consistency of the results over a period of time and across researchers (Lincoln, 1985;
Miles, 1994). To address dependability in my study, I relied on consultation with Program
Advisory Committee members. They were asked to comment on the clarity of the research plan
and its potential for consistency over time and across researchers. Also, they were asked to
critique all aspects of the study, particularly data collection, analysis, and results to determine
dependability.
Confirmability
Confirmability assumes that the findings are reflective of the key informant’s
perspectives as evidenced in the data, rather than being a reflection of my own perceptions or
bias.
5.11. Ethical Approval
The Research Ethics Board at the University of Toronto approved this study in August 8,
2013. This study was considered minimal risk. This study conducted in collaboration with the
researchers in Kuwait and Pakistan who signed a collaborative agreement. They also have
extensive experience in research. Appropriate local ethics approval was gained from two other
global cities i.e. Kuwait and Karachi (Kuwait: Joint Committee for the protection of human
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subject in research of the Health Science Center and Kuwait Institute for Medical Specialization
in April 04, 2014; Karachi: Ethical Review Board of HOPE in Sept 27, 2013) (See Appendix 7,
8, 9).
To protect the privacy, key informants involved in the qualitative portion of this study
have not been identified. The key identifying the participants and institution kept in a separate
file on a separate computer and is password protected. The study data was anonymized for the
research analysis and dissemination of results. The results of completing the semi- structured
questionnaires archived and stored on University of Toronto property. The participants were
explained about the right to withdraw from the study at any time and that there would be no
potential physical, psychological, economical or legal harm to the participants. There are no
direct benefits to the participants. The study provides valuable information on structures,
processes and outputs of pain management programs at representative institutions in the
locations studied; results from this study informed attempts to improve pain management at the
locations studied. The study is a pragmatic one it is anticipated that the results can be generalized
to other pain clinics/and countries.
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Chapter 6
Perspective of Academic Pain Clinic Leaders in Global Cities on Barriers to Delivery of
Services for Chronic Non-Cancer Pain
Chapter 6 is submitted to Pain Medicine journal on June 25, 2016
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Abstract:
An increasing proportion of the global chronic pain population is managed through services
delivered by specialized pain clinics in global cities. This paper describes results of a survey of
pain clinic leaders in three global cities on barriers influencing chronic non-cancer pain (CNCP)
management provided by those clinics. It specifically characterizes how the global city location
of the clinic influences those results. A cross-sectional prospective survey design was used and
data was analyzed using quantitative and qualitative content analysis. Krippendorff’s thematic
clustering technique was used to identify the repetitive themes in the data. Key informants were
pain clinicians (n=4 women and 8 men) responsible for outputs of specialized pain clinics in
academic hospital settings in three global cities: Toronto, Kuwait and Karachi. All but one of the
key informants had their primary pain training from Europe or North America. In Kuwait and
Karachi, pain specialists were anesthesiologists and provided CNCP management services
independently. In Toronto, pain clinic leaders were part of some form of multidisciplinary team.
Using results of a question asking for the top three barriers, ten themes were identified. These
themes were artificially organized in three thematic domains: infrastructure, clinical services and
education. Ranking of 31 pre-defined barriers showed variation in perception of barriers
dependent on clinic location, but also demonstrated shared experiences across thematic domains.
Findings from our study should help to inform global and local efforts to improve access to and
implementation of CNCP services globally. (249 words)
Key words: chronic non-cancer pain management, clinical services, barriers.
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6.1. Introduction
Chronic non-cancer pain (CNCP) has become a serious public health issue affecting 10
percent of the world’s population (more than 70 million people), globally (Jackson, 2014). It can
have a multitude of causes and produce a wide variety of disabilities (Chou, 2009). Several
studies have shown that there is substantial variability in the way clinicians approach and treat
CNCP (Ballantyne, 2003; Green, 2002; Leverence, 2011). Nevertheless, pain management
practice guidelines have been developed and disseminated together with continuing medical
education (CME) programs (Chou, 2009; Practice Guidelines for chronic pain management:
ASRAPM, 2010; Furlan, 2010; Hardy, 2002). They generally recommend meeting pain-related
healthcare needs through accessing specialized pain clinics. An increasing proportion of the
global CNCP population have access to such clinics. However, little or no information exists on
the experience and perception of leaders of those clinics with respect to the factors that impede
their chronic pain management practices. As well, there is lack of information about interests or
the ability of pain specialists to apply the guidelines or practices they have learnt.
Indeed, despite the fact that many research and clinical studies conducted in many
countries on all aspects of pain services have been published, factors affecting output of the pain
management services remain poorly described and understood (Rao, 2006). Furthermore,
published studies have not explored barriers emerging from the interplay between specialized
clinical training and the settings and policies of the institution where those clinical leaders
practice. Pain specialists working in leadership positions in clinics providing CNCP services are
uniquely poised to serve as key informants on these issues. We have taken a qualitative
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descriptive approach to gaining insight into work demands in clinical areas and levels of
accountability surrounding pain management (Rees, 2000; Richards, 2007; Sandelowski, 2010).
Many global cities (Rodwin, 2002) have access to highly qualified medical specialists,
including pain specialists who practice in well-equipped academic medical centers. Practitioners
within such centers should have comparable opportunities to disseminate established and
emerging clinical strategies and protocols for improving the well-being of people seeking relief
from CNCP symptoms. This study is part of a larger research project exploring opportunities and
challenges for improving availability of CNCP services globally, using a global cities lens
(Lakha, 2016). Toronto, Kuwait and Karachi are global cities located in countries with
distinctive cultures, histories and economies that are reflected in the way their health-care
systems function. All are investing in developing and maintaining healthcare systems in which
global best practices are accessible. As these global best practices are not regulated at a global
level, they can be adapted, according to the local context of these global cities.
The aim of this part of that larger study was to compare and characterize the experience
and perspectives of pain management clinical leaders regarding barriers and strengths of
specialized pain clinics located in Toronto, Kuwait, and Karachi. The terms pain clinic leaders,
pain specialist and pain clinicians are interchangeably used in the present study. All are used
pragmatically to characterize clinicians practising in specialized pain clinics, independently of
any formal certification. This paper reports on a portion of the results obtained from a semi -
structured interview carried out with four pain specialists in each of the three global cities
studied.
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6.2. Methods
Study design:
A cross-sectional prospective semi-structured questionnaire was used to investigate the
barriers to services for CNCP in academic hospitals settings. The survey was conducted among
key informants practicing in specialized pain clinics associated with large teaching hospitals and
located near the center of three global cities, namely: Toronto, Kuwait and Karachi.
Setting:
These clinics and their host institutions were either privately run by non-governmental
organizations or run directly by the government. In the present study, a chronic pain clinic is
defined as a facility staffed with health care professionals who are specialized in the diagnosis
and management of chronic pain symptoms. These pain clinics had to be an established pain
management unit, and/or a division/department of an academic health care center. The clinic had
to be recognized as being responsible for specialized services for the diagnosis and management
of patients with chronic pain. Appropriate local ethics approval was gained from all three global
cities (Toronto: University of Toronto Institutional Review Board; Kuwait: Joint Committee for
the protection of Human Subject in Research of the Health Science Center and Ministry of
Health Standing Committee for Health and Medical Research ; Karachi: Ethical Review Board
of HOPE). Signed consent forms were attained from the key informants prior to participation in
the study.
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Sample:
Initially, all key informants in the pain clinics were provided with a study information
sheet and a copy of the survey questionnaire. In the first section of the questionnaire, the
participants were asked if their department offered services for the treatment of 1) acute pain, 2)
chronic non-cancer pain, and/or 3) cancer pain and/or 4) paediatric pain. Criteria for inclusion of
a pain specialist was his/her involvement in the delivery of CNCP management services 6 month
prior to completion of the questionnaire. The focus of this study was on management of general
CNCP. Key informants who provide care exclusively in paediatric or cancer pain departments
were excluded.
Based on the above criteria, semi-structured, guided interviews were carried out by the
lead author (SFL) with a convenience sample of clinicians in leadership positions in pain
management at four clinics in each of the global cities: Kuwait City (N=4), Karachi (N= 4) and
Toronto (N= 4). Key informants were involved directly in the delivery of clinical CNCP
management services. Since many of these participants were engaged in this process at both
public and private settings, participants were asked to reflect on their experiences with the public
academic settings only.
Study Questionnaire:
The study questionnaire, developed by the study investigators, was designed to gather
information about pain management and pain services in terms of structural elements, clinical
care processes, and barriers of the system under study. The questionnaire was vetted by Toronto
based experts in comprehensive pain management and was pilot-tested in one hospital in
110
Toronto. Based on that feedback, some minor changes were made to the language and format of
the questions. The questionnaire sections were rooted in questions found in well-established
research instruments (Donabedian, 1988; Frechtling, 2007). The questionnaire was delivered in
English at all the sites and has three different parts: Part I asks questions about the background of
the institutions and of the key informants; Part II covers the organizational structure and clinical
activities of pain services; and Part III consists of probes concerning clinic strengths and
barriers/difficulties encountered in managing clinic outputs.
Results reported and analyzed in this article dealt with a portion of Part III of the
questionnaire (See Appendix 6). Part III of the questionnaire has two section inquiring about a)
top three barriers - this section sought single-phrased responses to the open-ended questions
regarding key informants’ perceived three top barriers; and, b) comprehensive barriers – this
section provided a list of barriers related to infrastructure, clinical services, education, and
training developed from a systematic review of the literature (Lakha, 2015, 2016). Key
informants scored their perceptions of the magnitude of their experience of those predetermined
barriers using a 4 points Likert scale (0 = not a barrier; and ++++ = extreme barrier) (see
Appendix 6).
Data Collection:
Upon agreeing to participate in the research, an appointment for an interview was
scheduled at the convenience of the key informant. The first part of the data was collected using
a self-administered questionnaire that included information about key informant’s age, gender,
country of origin, education, medical speciality, and years of practice. Subsequently, individual
111
semi-structured face-to-face interviews were conducted in a consulting location at the pain clinic;
with permission from each key informant, interviews were audio-recorded. Key informants were
asked to describe principal barriers limiting satisfactory operation of pain programs in general.
The opening question of this part of the interview was “state three principal barriers you face
while delivering pain management services at your clinics”. Subsequent to their identification of
the three barriers, a comprehensive list of perceived barriers, extracted from a review of the
literature, was given to the key informants for their ranking.
Data Analysis:
Descriptive statistics were used to describe the general characteristics of the institutions
and key informants. Comparisons of barriers across the sites were done using contingency tables.
Interviews were transcribed from audio recordings, then entered as text and coded using QSR
NVivo Software (NVivo: QSR, 2012). Text data describing informants’ top three barriers was
subjected to Krippendorff’s method to identify repetitive themes in the content (Krippendorff,
2012). Led by SFL, data were grouped according to Krippendorff’s analytical technique of
clustering to identify phrases and sentences that shared some characteristics. As an example,
statements such as “lack of support staff,” “need more MDs,” and “lack of specialized services”
were categorized as lack of human resources theme. Dendrograms, or tree-like diagrams, were
created to illustrate how clusters were grouped into themes. An example of a dendrogram is
presented in Figure 4. Two co-authors (PP and AMG) reviewed the text data and content in order
to validate the clusters and themes, establishing their credibility through peer check. The analysis
was finalized by identifying several themes that emerged from the specific description of
barriers.
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To analyze responses to the list of 31 barriers to treating CNCP patients, the magnitude
assigned to each perceived barrier was computed by aggregating responses to the 4 point Likert
scale, and calculating a mean response for each listed barrier. The mean scores were then
recorded as follows: Mild barriers (0-2), Moderate barriers (>2-<3), and Severe barriers (3-4).
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Figure 4: Sample Dendrograms or tree-like diagrams
Figure 4: Dendrograms, or tree-like diagrams, were created to illustrate how clusters were
grouped into themes.
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6.3. Results
A) General Characteristics:
All pain clinics were located in large university affiliated hospitals, in core urban areas of
Toronto, Kuwait and Karachi. In Kuwait and Karachi, pain specialists provided the services in
solo practice, while in Toronto, informants/clinicians were part of some form of
multidisciplinary team (pain physician, a nurse, and a psychologist/or physical therapist)
providing pain services. All informants worked in pain clinics that offered services for the
management of chronic pain but the specific type of those services varied considerably across
sites.
Information was gathered from 12 key informants (4 women and 8 men). Key
informants’ age ranged from 36-64 years (Toronto), 36-55 years (Kuwait), and 46-55 years
(Karachi). All key informants from Toronto, Kuwait and Karachi graduated from English
universities and had all (with one exception) received their primary pain management training at
medical schools in Europe or North America. All key informants from Kuwait and Karachi were
anesthesiologists. In contrast each of the key informants from Toronto had different
specializations (i.e. Anesthesiology; Family Medicine; Physical Medicine and Rehabilitation). In
Toronto, the average time in pain practice for key informants was 15 years or more, while in
Kuwait and Karachi, the average time in pain practices ranged from 5-15 years.
B) Principal Barriers for Pain Management in the Pain Clinics:
Ten general themes were identified that accommodate all of the key barriers reported at
all sites for managing CNCP. The themes are artificially organized into three domains:
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Infrastructure, Clinical Services and Education. They correspond with the larger domains of
structure, process, output for which evidence exist in the literature (Lakha, 2015; Dobkin, 2008).
The themes are summarized from single–phrased responses about the three principal barriers and
outlined in Table 2. Table 2 compares and contrasts the themes of principal barriers for the
management of CNCP among the three global cities. It illustrates that least one key informant
from the studied cities reported a barrier corresponding to them.
B1.Infrastructure:
The term ‘infrastructure’ is understood to refer to the structural and operational
framework of an institution (Ademiluyi, 2009). It is used to cover three themes (#1, #2, #3)
recognized in informant responses: scarcities in general resources; lack of human resources or
personnel in the pain clinic; and obstacles emerging from structures of the hospital system in
which the clinic functioned.
Theme One: Lack of access to general resources by the pain clinic: Key informants, in each city
identified limitations in access to general resources as an important barrier for delivery of CNCP
management services. They reported that dearth of supplies, inadequate funding, lack of
infrastructure and budgeting were barriers. Structural issues were noted such as: “lack of
dedicated space”, or “space for pain clinic”. In addition, informants from Kuwait and Karachi
also cited limited availability of equipment and supply services.
A key informant from Toronto was of the opinion that delivery of CNCP management services
would be improved if hospitals implemented a standardized multidisciplinary service delivery
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model that could operate across discipline-focused departments at the institution, indicating that
his/her center lacked a model of multidisciplinary care, and intoning that it is “desperately
needed”.
Theme two: Lack of human resources in the pain clinic: The staffing shortage in the pain clinic
related to two components: lack of support staff and lack of access to medical/other specialists.
Key informants from across the study sites mentioned lack of support staff (such as
administrative and secretarial) and dedicated staff support (such as nurses) for the pain clinic
operations. The pain clinicians seemed to feel isolated and unsupported. The participants further
reported lack of access to other supporting specialized services (psychologist, psychiatrists,
and/or physiotherapist) in the pain clinic or hospital, which made delivery of comprehensive pain
management services difficult. A key informant from Toronto stressed the need for greater
access to dedicated services within the pain clinic and emphasizing the need for psychological
services and mental health support. Along a similar vein, key informants from Karachi and
Toronto emphasized the need for more pain management specialists in the clinics.
Theme three: Hospital system: Another theme, mentioned by one informant in each city related
to obstacles caused by the impact management and operations of the hospitals hosting the pain
clinic. Key informants mentioned the unwillingness of hospital administrators to provide or
expand support for pain clinic operations to meet needs perceived by the clinic leadership.
A key informant from Toronto reported that hospital policies prevented delivery of simple pain-
reducing interventional procedures such as injections in the space provided for consultation.
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B2.Clinical Services:
The clinical services domain consists of three themes (#4, #5, #6) that cluster around the
relationship among the providers and reflect upon the regular practices of pain specialists
managing patients with CNCP, and the impact of this work on them as individuals and clinicians.
Theme four: Communication/ Collaboration by providers: Toronto’s key informants identified
lack of communication among inter-professional teams as a barrier, while this was not the case
for key informants from Kuwait and Karachi where none of the participants practiced in a multi-
disciplinary clinic. A key informant from Toronto emphasized the need for better collaboration
and cooperation across the city among pain management physicians, programs, and institutions
that have traditionally worked independently and each have specialized strengths.
Theme five: Patient issues: Patient issues in clinical services fell into two areas: cultural barriers
reflecting limitations arising from cultural factors that influenced how clinical practice were
implemented (e.g. male physicians cannot see female patients etc.) and patient expectations
concerning what they believed the clinic should be doing for them (e.g. taking away their pain).
A key informant from Toronto reported difficulties in communicating with patients due to
cultural barriers. Respondents reported struggling to understand the cultural beliefs of patients,
due to cultural diversity within the city and general population. Furthermore, key informants
from Kuwait perceived patients as having unrealistic expectations regarding outcomes of pain
management.
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Theme six: System barriers: Findings in this theme include excessive demand for services, lack
of financial support for providers, patients’ lack of financial means to pay for medication or
procedure, and lack of access to potent analgesics. A key informant from Kuwait mentioned that
their pain clinic receives overwhelming numbers of referrals for pain management services from
all over Kuwait and sometimes from other parts of the Gulf region. A key informant from
Karachi reported insufficient financial compensation for providers working in pain clinics,
stating “the salary scale for providers is so horrible, that this is why doctors do not come to this
field”. A Karachi key informant stressed lack of funds for poor patients to buy drugs or access to
pain management interventions. Pain specialists from Karachi indicated that there is limited
access to strong opioids and morphine at the pain clinic or hospitals for CNCP patients. Lack of
access to opiates was also a concern to key informants of Kuwait.
B3. Education:
The education domain encompassed four themes (#7, #8, #9, #10) that cluster around the
professional development of the pain management specialists, actual training of those who claim
to manage CNCP, CNCP knowledge and awareness among general physicians, and CNCP
knowledge among the general population.
Theme seven: No systematic pain management education: Only participants from Toronto
referred to a dearth of systematic training programs around CNCP best practices for general
healthcare workers and pain specialists, one participant suggested that lack of structure in
educational programs for pain is a major barrier.
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Theme eight: Lack of actual pain management knowledge: Participants in all three cities
mentioned there is a disparity in the training and level of knowledge of professionals working in
the pain clinics including pain management physicians, nurses and other allied health
professionals (including some with formal training and others with no formal pain training at
all). This is exemplified by an assertion from a key informant that “pain practitioners are not
truly trained, but they claim to be”.
Theme nine: Lack of pain management knowledge among general/primary care physicians: Five
key informants from Karachi and Kuwait identified inadequate CNCP knowledge and training
among primary care physicians and family physicians in other than pain management areas.
Specifically, they referred to a lack of awareness about CNCP management methods, pain
clinics, and other resources among general physicians.
Theme ten: Lack of knowledge CNCP management opportunities by the general public: A key
informant from Karachi highlighted the lack of general education among poor patients
concerning health and health care concepts. This general lack of health care knowledge impacts
in turn the understanding of the need of pain services and the patients’ responsibility for
participating in the pain management process. It includes providing information, compliance
with medical care, reporting outcomes. Key informants from Karachi and Kuwait also mentioned
the lack of awareness specifically about CNCP management among the general population.
C) Key informants’ Perception of Barriers for managing CNCP:
The items in Tables 3a, 3b and 3c are coded according to a grey scale determined by
mean values of Likert scale responses to thirty-one barriers listed in Part III of the questionnaire.
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“Lack of Psychological and social support services” (under the domain of Infrastructure) and
“Coordination of care” (under the domain of Clinical Services), were perceived as severe barriers
by all the respondents in all global cities. The barriers that scored mild to moderate in all global
cities were social, cultural, regulatory, and access barriers. Key informants prioritize the
perceived barriers by rating them as severe.
Barriers perceived as severe in Karachi and Kuwait but not Toronto were: “excessive-
regulation of access to opioids”, “patient adherence to treatment”, “lack of awareness of the
value of referrals to pain clinics” (under the domain of Clinical Services), “lack of awareness
about pain management among patients”, “lack of staff knowledge and knowledge about pain
resources among general physicians” (under the domain of Education). Barriers perceived as
severe in Kuwait and Toronto but not Karachi were “lack of time” and “access to resources”
(under the domain of Infrastructure). Barriers shared by Toronto and Karachi but not Kuwait
included cost of medications, training and education of staff and travel time to reach the clinic
(under the domain of Infrastructure and Education). Perceived barriers for CNCP management
were rated high by Karachi key informants while key informants from Toronto rated them the
lowest in all three domains.
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Table 2: Principal barriers in pain programs
Domain Themes Toronto Kuwait Karachi
INFRASTRUCTURE
1. General Resources x x x
2. Human Resources x x x
3. Hospital Systems x x x
CLINICAL
SERVICES
4. System Barriers -- x x
5. Patients Issues x x
6.Communication/Collaboration
among providers
x _ _
EDUCATION 7. Shortage of systematic pain
management education program
x _ _
8. Lack of pain management
knowledge among pain clinic staff
x x x
9. Lack of pain management
knowledge by general physicians
_ x x
10. Lack of education
of patient population
_ x x
*x: At least one key informant from the city indicated by the column heading reported a barrier
that could be assigned to the barrier theme row.
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Table 3: Perception of Barrier for Managing CNCP
3a) Infrastructure Toronto Kuwait Karachi
i) Psychological and social support services 3.25 3.75 3.75
ii) Lack of access to interventions (blocks, spinal stimulators etc.) 2.25 2.25 2.75
iii) Lack of time and resources to address non-cancer pain 3 3.25 2.75
iv) Access to assessment of patients with CNCP 1.5 1.5 2.75
v) Clinic too far or inconvenient for patient to travel to 3 1.75 3.25
vi) High cost of medications and treatments 3 0.75 4
vii) Lack of access to wide range neuropathic adjuvant medications
(e.g. gabapentin, pregabalin, duloxetine)
2.25 1.5 1.75
viii)Access to wide range of opioids 1 3 3
ix) Regulation of opioids by Narcotics Bureau, Dept. of Health 0 3.25 3.25
x) Excessive regulation of opioids in pharmacy 0 3 3.5
xi) Waiting list to see physicians/ specialists 3 2.5 2.75
xii) Regulatory barriers to effective pain management 1.5 2.75 2.75
3b) Clinical Services/ Practices Toronto Kuwait Karachi
i) Coordination of care, particularly acute to chronic transition 3.25 3.5 3
ii) Patient and family fear that reporting pain will exclude patient
from clinical trials or treatment
1 1.5 2
iii) Patients’ reluctance to take opioids 2 2.25 3
iv) Legal and regulatory sanctions for opioid use 0.5 2 3.5
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v) Inadequate reimbursement for providers 1.75 0.5 2.25
vi) Patient and family failure to mention pain to providers 1 1 2.5
vii) Religion (e.g. male physicians cannot see female patients etc.) 1 0.5 2.5
viii)Cultural Barriers to accepting taking pain medications 1 2 2.5
ix) Cultural Barriers (e.g. male patients do not complain as they think
pain is sign of weakness)
1 1.25 2.25
x) Physicians’ reluctance to prescribe opioids 0.5 3.75 3
xi) Patient’s fear drugs will lose their effectiveness 2.25 3.25 3
xii) Patient adherence to treatment regimens 2.75 3.25 3
xiii)Lack of public awareness about presence of pain clinic 2.25 3.5 3.75
xiv)Cognitive impairment hindering assessment 1.75 2 2.5
3c) Education Toronto Kuwait Karachi
i) Inadequate CNCP management training and education of staff 3 1 3
ii) A priority on curing non-cancer pain over managing 3.75 2.25 3
iii) Knowledge about available resources 2.5 3.25 3
iv) Awareness of other physicians about pain clinic benefits for
referral purposes
1.75 3.5 3.75
v) Inadequate staff knowledge of pain management 2 3.25 3.25
*Ranges 0-2 (mild); >2<3(moderate); 3-4 (severe); N=4 from each studied city.
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6.4. Discussion
To the best of our knowledge, this is the first comparative study of specialized pain
clinics in academic hospitals providing CNCP management services in different global cities.
This study provides a rich and descriptive picture of pain management clinician’s experiences
and perceptions of barriers about CNCP management. Despite differences in the social,
economic and cultural characteristics of Canada, Kuwait and Pakistan, many common elements
were shared regarding the experience and perception of barriers and strengths. This may reflect
similarities in the training of pain clinic leaders located in global cities as most of them were
trained in Europe or North America, but also similarities in the problems common in pain
management. Through the application of a structured qualitative description method, we were
able to identify and elaborate on three distinct domains relating to pain management practices
within academic hospitals: 1) Infrastructure, 2) Clinical Services, and 3) Education. The
study also demonstrated some interesting but understandable differences between the three
global cities in prioritizing barriers. Since this study was conducted in the context of principal
barriers about pain management in their respective pain clinics and cities, one key informant may
have perceived a barrier not reported by others in a different global city.
Across the three domains, multiple barriers were identified; many of those barriers were
experienced across all three global cities. Infrastructure issues included lack of resources,
including human resources especially support from allied health professionals like psychologists.
Well-developed comprehensive treatment plans were perceived as being impeded by hospital
system barriers. Clinical services issues focused on the interpersonal aspects of provider-patient
interaction to pain care. The identification of multiple specific themes within this domain may
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help to better isolate targets for improvement in local settings. Education challenges included
those related to lack of awareness among the general public and other health care providers
concerning opportunities and challenges associated with CNCP care. There was also a concern
about the urgent need for more education development initiatives for the clinicians and staff
working within existing pain clinics. In the quantitative part of survey, where barriers’ weight
scores were summed for all the perceived barriers across the domains, Karachi scores the highest
in terms of barriers and Toronto the lowest. The themes and survey highlighted the complexity of
managing CNCP, and the clinical difficulties routinely faced by the pain management specialists.
The findings of the present study are in line with the results reported by Lalonde et al. (Lalonde,
2014) regarding main barriers for access to pain management service. Additionally, the present
study provides a picture of what pain specialists say about the challenges and improvement in
CNCP that can guide future CNCP academic activities in the global cities.
Suggestions for Overcoming the Barriers Themes Related to the Infrastructure Domain
The lack of widely recognized programmatic structures for running pain clinics forces
each clinic leader to navigate his or her own path. Many issues related to administration and
human resources cited in this study might be improved through the integration of a health care
team model supported by the institutional host of the pain clinic. It is clear that pain clinic
leaders perceived a need and an opportunity to train more pain medicine specialists, as the supply
of pain specialists appears to be declining (Breuer, 2007). The use of nurses as care coordinators
providing support for patients with chronic pain has been shown to improve patient satisfaction
and pain scores (Bair, 2009; Dobscha, 2009; Matthias, 2010). Timely referrals for consultations
with physiotherapist, chiropractor, or osteopath have been found to improve patient self-
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management, and reduce the use of medication and health care consultations (Gurden, 2012). It
is evident that increasing interdisciplinary collaboration will aid the process of dealing with
CNCP patients and improve outcomes. Other collaborative and interdisciplinary approaches may
help with the management of patients with complex psychosocial and behavioral issues, as
chronic pain is prevalent in two-thirds of patients with major depressive illness (Arnow, 2006;
Bair, 2003). Therefore, mental health practitioners need to be a part of CNCP pain management
teams.
In the last decades, the multidisciplinary approach to pain management has become
popular, and has led to the emergence of sub-specialization in pain management for
anesthesiologists, neurosurgeons, physiatrists, neurologists, and psychiatrists. Such sub-
specialisation, however, has been viewed as bringing forth variation and fragmentation of care
(Stanos, 2007). Fortunately, healthcare authorities of several jurisdictions have recognized the
need of establishing a uniform standard of training and certification for pain specialists
regardless of discipline (Gautam, 2013).
Suggestions for Overcoming the Barriers Themes Related to the Clinical Services Domain:
In the Clinical Services theme, perceived barriers were communication with patients, and
addressing differing expectations between patients and providers in pain management, topics that
have been previously suggested (Frantsve, 2007; Parsonas, 2007). Lack of shared understanding
of goals between patients and pain clinicians may contribute to perceived barriers in CNCP
management. To overcome these barriers, pain clinicians need training in handling challenging
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encounters. To have a positive impact for all involved, pain clinicians need to acquire tools and
skills, which are employed by behavioral health management practitioners.
Suggestions for Overcoming the Barriers Themes Related to the Education Domain:
To address educational barriers in regards to pain management for both health providers
and general population certain strategies should be employed. University interdisciplinary
continuing education programs (Lalonde, 2015; Chelimsky, 2013; Leila, 2006) should be made
available to all pain management specialists and allied health professionals. Such programs
should address training and support in opioid management, physical diagnosis, and a broader
understanding of the role of non-pharmacologic interventions, as well as better communication
and coordination of care with the broader inter-professional network involved in dealing with
their patient health concerns. Regulated and unified training for pain practitioners, standards for
the operating pain clinics, and specialized funding ought to be among the priority list of health
care planners and policy makers.
Limitations of the study:
While the study offers unique data from academic pain clinic in global cities, the three-
city convenience sample may not be representative of other global cities. The sampling was
directed to bring forth the uniqueness of each context, with variation in the rationale for selecting
study cities. Any interpretation and use of results should take this into consideration. We did not
formally calculate an index of inter-coder agreement when analyzing our qualitative results.
However, there was high inter-rater agreement for barrier themes. The sample was small, non-
random, and limited to clinical leaders at academically affiliated specialized pain clinics in
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global cities. As in all self-report research, the findings need to be supported by further detailed
observational studies involving other global cities from different regions. Further research is
needed to review and determine which interventions are most effective in overcoming barriers to
deliver the services of CNCP in global cities worldwide. Such information will be crucial for
helping practitioners, policy makers, hospital administrators, and service users to understand and
formulate a better and more self-reflective way to deliver health services to CNCP patients.
6.5. Conclusion:
Pain management gets limited attention in medical training and in research, even though
there is a widely recognized understanding of the prevalence of the large global burden caused
by chronic pain. Findings from our study provides a new lens on barriers to improve delivery of
clinical care for CNCP conditions experienced by people seeking help from specialized pain
clinics in global cities. Overcoming the barriers found in the study recognizes the need to
optimize resources, and delivery of a safe, effective, affordable pain treatment.
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Chapter 7
Survey of Clinic Outputs Associated with Services Provided for Management of Chronic
Non-Cancer Pain in Global Cities
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7.1. Introduction:
CNCP is a major health problem for several reasons: its associated disability (Breivik,
2006; Van Leeuwen, 2006); its extensive use of health care services (Mantyselka, 2001; Blyt
2003; Breivik, 2006); and its high prevalence globally (Ospina, 2002; Breivik, 2006). Despite its
major impact on health and healthcare, its management has been neglected for many reasons
(Goldberg, 2011). These relate to a tendency to view CNCP as a symptom rather than a disease.
Due to minimal training in medical schools with respect to CNCP, there is tendency to approach
CNCP patients with an acute care model rather than a chronic care model. Numerous studies
have shown that the clinical management of various CNCP conditions remains unsatisfactory
(Collet, 2004; Breivik, 2006; Sessle, 2011).
In the earlier part of the thesis, several challenges were identified based on review of
scientific literature with respect to the CNCP management. However, there is lack of evidence on
the key issue of organizing clinical services for CNCP patients. Likely, because of their status as
global cities, Kuwait, Karachi and Toronto have the largest concentrations of CNCP patients in
their respective nations. Beyond what they share as global cities in terms of human and structural
resources, these cities differ from one another in important ways, particularly with respect to key
national, health, social, and long-term care policies that influence how they care for their
growing number of CNCP patients. Differences in history, politics, and culture have led to
different choices with respect to accessing globalized strategies and services for dealing with
CNCP. As a result, these cities can serve as social laboratories in which to test the impact of
increasingly globalized innovations that address the health and social needs of CNCP
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populations. This chapter assesses the organizational and clinical issues in the management of
CNCP patients in the global cities. The aim of this chapter in the thesis is to gain an
understanding of pain clinicians' experiences related to delivery of CNCP management services
in their pain clinics of their global cities.
7.2. Methods: (For Detailed Methodology Chapter # 4)
Four key informants (clinic directors or one of his/her close collaborators) who were in
charge of CNCP service delivery in their respective academic hospitals represented each three
global cities i.e. Kuwait, Karachi and Toronto. A structured questionnaire was administered to all
twelve (Men= 8, Women= 4) key informants. Participants were asked to fill out a survey that
gathered information related to: their age, gender, education, speciality, level of confidence for
different services, and a ranking of barriers. Then in a structured interview, a series of questions
related to: organization of infrastructure, activities, and services, education and research guided
the collection of qualitative data. Key informants’ interviews were audio taped, transcribed, and
imported into software NVivo for thematic analysis. Qualitative analysis of interview transcripts
allowed for assessment their capabilities, deployment and accessibility of the CNCP
management services.
7.3. Results:
Characterization of the perspective and experience of the key informants is key to
interpreting these results. The results presented below summarize the main views of key
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informants on the structure, organization and delivery of CNCP services in their clinics and in
their cities in general. Responses were analyzed for themes and categorized into following
domains Infrastructure, Clinical Services, Education and Research outputs. These domains are
defined as follows:
Infrastructure:
The term ‘infrastructure’ refers to the structural and operational framework of an
institution (Ademiluyi, 2009). We defined “infrastructure” as the total of all physical, technical
and organizational components or assets that are required for the delivery of pain care services.
Care for patients provided on out-patient pain clinics involves inherent structural differences.
Delivery of Clinical Services:
Many potential causal pathways link the above infrastructure with ways that CNCP
management processes can be provided for out-patients which make up the bulk of patients
served by the pain clinic.
Education Activities:
Education output refers to the measuring of educational services and activities in pain
clinic as well as the number of trainees in a particular program and their activities.
Research Activities:
The tangible and technical factors of research management include organizational structures for
research management, and types of research, as well as categories of research funding, all
measured and tracked through research output.
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7.3.1. Survey Results -Toronto
Background Information
Two men and two women were the key informants selected from Toronto
Key informants ranged from 36 to 64 years of age.
Practicing pain management for at least 15 years.
Graduated from English speaking universities and have additional training in pain
management.
All key informants involved in the care of chronic pain patients had a distinctive
specialization in Medicine or other health discipline i.e. Anesthesia, Family Medicine,
Physical Medicine and Rehabilitation and Nursing.
All the clinics were located in large university-affiliated hospitals.
Some form of multidisciplinary services at minimum were provided (by pain physician, a
nurse, and a psychologist/or physical therapist).
The institutions in which these informants were working offered services for the
management of chronic pain but these varied considerably.
INFRASTRUCTURE Utilization:
Themes:
1) Organization and Conceptualization of Pain Care Clinic
By design, all four pain clinics were located in large university-affiliated hospital. As per
my inclusion criteria, key informants reported being responsible for operation of a clinic
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providing specialized chronic pain management services. Those clinics all had a core staffing
level of at least one pain specialist, one nurse, one psychologist/or physiotherapist, but each was
led by a physician with different specialty background: anesthesiologist, physiatrist, and general
practitioners. However, only one of the key informants reported providing multidisciplinary
services for the assessment and treatment of chronic pain (P3). Another commented that the
clinic did not provide any interdisciplinary or multi-disciplinary services by choice (P4). The
services provided by the pain clinics varied and could be any or all of the following: provision of
assessment and diagnosis, interventional and implementation of care pathways. The structures
supporting the operations of the clinics varied in terms of host institution services and resources
drawn upon. They also differed in types of patients treated, though most patients with chronic
pain were treated in an outpatient setting. Post-surgical pain and cancer pain patients where not
directly cared by the clinic. Pain clinics in Toronto offered a range of proficient pain
management services for patients with chronic pain. Key informants reported a varied list of
their expertise from diagnosis assessment to interventional management. These included opioid
management and neuropathic pain management, functional rehabilitation, myofacial pain clinic
with trigger point injection, group self-management programs, methadone for pain, spinal and
other pain injections and spinal disorder. All pain specialists were paid through universal health
coverage system (OHIP). There were a few private consultation options/mechanisms for special
populations i.e. injured workers, motor vehicle accidents, other litigation cases or international
patients where the pain specialists were paid through either personal payment from patient or
third party payers.
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2) Human Resources.
A wide variety of healthcare professional resources where represented in clinic teams
responsible for delivering chronic pain care services in Toronto. General practitioners,
anesthesiologists and physiatrists were the most common types of physicians integrated into
those teams. The majority of care team professionals were associated with physiotherapy,
chiropractic, and nursing related to pain care. Psychiatry, psychology and social work
professionals were rarely directly associated with the clinics. All key informants pointed to the
lack of access to services from such professionals as barriers to be overcome if better care
outputs where to be achieved.
Although not directly integrated into the pain clinics staffing list, a wide variety of
medical specialties (e.g., neurologists, psychiatrist) and other healthcare professionals (e.g.,
social workers) were also commonly consulted for particular cases on as needed basis. Full-time
staff were defined as staff working in the pain clinic for at least four days per week though few
members of the pain clinic staff roster met that criterion. Most delivered their professional
services in other settings as well as in the pain clinic.
Three of the four key informants assisted as the principal treating physician at the pain
clinic. They provided care at various levels, such as direct treatment, prescribing medication,
prescribing rehabilitative services, performing pain-relieving procedures, counseling of patients
and families, (directing a) multidisciplinary team, or (coordinating) care with other healthcare
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providers for the CNCP patients. The number of hours worked by pain specialists at each clinic
varied from one day a week to full-time equivalent.
Nurses were involved in the treatment of chronic pain patients at all four sites, with the
number of hours worked varied by nurses from a few days per week to one or more full-time
equivalent nurses. The nurses were involved in providing assistance during the assessment and in
intervention. They were also involved in patients’ follow-up and teaching/education activities.
Key informants reported that the services of a psychologist, and pharmacist were available but
directly integrated within the pain clinic at one site, only on a case-to-case basis. One key
informant mentioned that their clinic had an occupational therapist on their team. Another key
informant stressed the importance and need to coordinate with other health care professionals
especially social workers (P4). With respect to secretarial support, all clinics offering treatment
to chronic pain patients had access to such a service. Three key informants had additional
administrative staff who managed every day clinics, however, all key informants mentioned that
they need more of them.
3) Pain Clinic Space Allocations
All key informants reported that all pain clinicians and allied staff providing care for CNCP
patients had to share consultation and assessment rooms with their team members. Two of these
clinics reported that they had to share these rooms with other discipline consultants. In some
clinics, the consultation and assessment were done in the same room. All key informants reported
lack of designated clinical area for pain services. One informant (P4) felt it was one of the major
obstacles in providing their services. Only one clinic in Toronto had access to in-patient beds but
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could only accommodate at most two in-patient cases in any given week. One key informant
stated they do not have conference room or any additional space for education activities. Other
key informants indicated that they have conference room facilities but it was a shared space and
used for multiple purposes, including research.
4) Institutional Financial Support for Pain Clinics
All key informants commented on ongoing funding concerns regarding the support of
pain clinic operations. Key informants mentioned there is no specific budget within the
institution/hospital for chronic pain management clinical activities or for buying additional
equipment. All respondents mentioned that in the past five years the pain clinic budgets had
stayed either constant or increased only slightly. Budgets were perceived as inadequate for the
need of the chronic pain management facilities and staff members (P1). Inadequate funding for
resources was perceived as leading to limiting service activities at the clinic (P2). One key
informant mentioned having minimal budget from the hospital, and that donors and
pharmaceutical educational grants covered most expenses of the clinic (P3).
5) Affiliation and Collaboration within the base Hospital
Key informants mentioned that despite having their clinics hosted by an
institution/hospital, they were nevertheless under the umbrella of a single discipline: physical
medicine and rehabilitation, anesthesiology, and neurosciences. All key informants mentioned
that the pain clinic is not main program of their hospital and it is always under the umbrella of
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some discipline. One expressed their disappointment that their clinic does not receive the same
kind of support as the other comparable divisions (P3). All key informants mentioned that none
of their programs have any formal affiliation or collaboration with any other pain clinic.
6) Access to Resources Needed to Deliver CNCP services
No lab and interventional equipment’s facilities were available within any of the pain
clinics studied. All key informants presented different scenarios regarding how they gained
access to those resources. Nevertheless, all pain clinics have access to all laboratories for blood
work, x-rays, MRIs, electromyography and nerve conduction studies, and equipment for
interventional pain management, within the hospital premises or in nearby hospitals. In regards
to equipment used within the pain clinic for CNCP patients, it was generally seen as inadequate
to meet demand (P2, P3, P4).
Summary of Infrastructure Salient Issues:
• Pain clinics are staffed by different health care disciplines (Anesthesia, Physical
Medicine and Rehabilitation and General/ Family Practice), each with a focused and
individual practice of pain management
• Direct budget from the hospital or affiliated institutions do not support clinic operations
• Lack of general resources, inadequate staff, space allocation was seen as insufficient
• Improved governance structure and collaboration within hospital and outside was
considered crucial to improve pain management delivery
• Better access to resources was necessary to address better delivery of pain care services
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Delivery of CLINICAL SERVICES:
1) Delivery of CNCP Services at Out-patient Setting
All clinics offered only outpatient services, primarily during normal business hours. The
clinic consultation serve to investigate and develop and/or revise pain management plans for
patients referred as out-patients by their physicians. The services provided are primarily focused
on detailed review of patient cases for the purpose of identifying or clarifying diagnoses,
interventional pain management, or making recommendations for modifying ongoing outpatient
treatment. No pain clinic reported operating every day of the week (range: 1-4 days per week).
Key informants mentioned that some of them spent eight hours per week treating chronic pain
patients while some spent 20 hr. or more per week. One key informant reported that some time
the clinic is restricted to operate only on certain days due to lack of availability of clinical space
(P4).
2) Workload and Wait Time
Key informants mentioned that the total number of new cases evaluated in the studied
CNCP clinics were around 500-650 per clinic and per year. One of the key informants
commented that it is difficult to identify the number of total new patients seen in their pain clinic
because they have various physicians with distinctive specialties and the same patient can be
considered a new patient for each physician. Each clinic assessed a new patient for 0.75 -2 hours
on their first visit where a pain specialist made a decision for further investigations, consultations
or treatment recommendations. All key informants reported that new patients had to wait
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approximately five to eight months for a first appointment at the pain clinic, even though they
had all the required information.
When the patients coming for follow-up visits were included, the volume of patients
increased to approximately 2,000-5,000 patient visits per year in each of these pain clinics. Pain
specialist spend approximately 15-30 minutes on each follow-up evaluation. All key informants
mentioned that they did not automatically offer follow-up visits to all pain patients. About 30%
of their patients are only assessed once and get a recommendation for management plan to be
communicated to their family doctor, when the clinic does not have much to offer to the patient.
This judgement depends on the patient’s needs and on the availability of services in a given
clinic. If the patient requires a lot of management within the clinic’s capabilities, the patient is
brought back in 1-3 months, following the first appointment, for serial follow-up until the patient
stabilizes. Otherwise, the pain specialist gives recommendations as part of the consultation note
sent back to the patient's or family doctor. If a patient had an interventional procedure, the patient
is usually seen after the procedure for follow-up visit. Only one clinic offered in-patient services
for diagnosis of complex patient needs via interdisciplinary approach. At that clinic the total
number of patients admitted was between 30 and 35 per year. Such admission, and a decision
about a need for further assessment and management, was completely based on the
interdisciplinary pain team’s judgment. In this clinic, specific patients were admitted to the in-
patient beds for elucidation of diagnosis and/or management plan (none of which could be
resolved during the out-patient visit). Key informants commented that each clinic had developed
unique niche services that were not available at other clinics in Toronto.
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All Key informants all believed that they treat CNCP patients as a whole person and that
they effectively identify their patients’ bio-psycho-social needs although they may not be able to
act on those needs. For example, all key informants reported having only limited direct access to
psychiatric and social work services for their out-patients. The only clinic with in-patient
capacity, had access to comprehensive psychiatry and psychology services , as well as to other
consultant services (general internal medicine, neurology, rheumatology, orthopedics,
neurosurgery) through the host hospital, but only for the in-patients. Patients were admitted to
the in-patient unit for one of two reasons: either a diagnosis or a treatment dilemma that could
not be resolved during the out-patient visit. Some key informants were also involved with
delivery of pain management services at other pain clinics not associated with the academic
hospital. A few of them were primarily interventionists; therefore, they spent from several hours
to several days per week providing diagnostic and treatment procedures for CNCP patients. This
generally involved direct billing for the procedure through OHIP (P4). All key informants from
all sites mentioned that, on occasion, they provided in-patients consultancy through the acute
pain services at their hospital, but we did not determine the extent to which this occurred.
3) Types of Patient Care Delivered
The types of chronic pain problems encountered most frequently across the all pain
clinics were neuropathic pain followed by musculo-skeletal pain, and low back pain. One key
informant mentioned that their pain clinic specialized in assessing spinal pain and that made up
60-70% of their accepted referrals. The clinical focus of each pain clinic was different, ranging
from musculoskeletal, craniofacial and pelvic pain to neuropathic pain, motor vehicle accidents,
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injured workers, and opioid management. All key informants mentioned that they dealt with a
heterogeneous population, but that population was made up predominantly by women and people
in their middle age between 40-60 yrs. One key informant commented on a recent increase in
number of geriatric patients seen at their pain clinic (P1).
4) Treatment Modalities Offered At the Pain Program
All pain clinics offered a variety of pharmacological and non-pharmacological therapies.
The latter included interventional, physical and psychological therapies. All pain clinics provided
different kinds of injections and nerve block interventions. This was done on both an outpatient
and in-patient basis. Only one key informant mentioned that they offered access to spinal
stimulators. In regards to psychological training only cognitive behavioral treatment,
mindfulness and support therapy were offered directly at the clinics. None of these program
offered on-going psychological assessment and treatment. In the present survey, it was found that
there was a wide variation between clinics in the practice of different interventional procedures,
as well as use of pharmacological and opioid prescriptions.
5) Clinical Activities of Pain clinics
Only one key informant reported that the clinic held multidisciplinary rounds twice a
month for their out-patient consultation. None of other clinics held regular multidisciplinary
meetings to discuss clinical cases, but all key informants mentioned that they discussed particular
cases with other physicians and allied professionals, as needed. One key informant mentioned
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that they only had multidisciplinary meeting to discuss the course of action for in-patients. None
of these pain clinics held regular rounds or meetings to review clinical progress or management
issues. Also, in regards to the decisions making process at the clinics, key informants mentioned
that they only consulted with the core team of physicians, and final decision came from the
clinic's executive leadership (P3, P4). All key informants felt that greater collaboration among
pain clinics could help to extend the scope and coverage of services provided to CNCP patients
6) Coordination of Care
Key informants mentioned the challenge of having their pain clinic as part of a large
academic hospital with many priorities. All kinds of other medical teams and individual medical
specialists are available for consultation at the hospital premises, but are also competing for the
same limited resources. One key informant P4 expressed an opinion that all CNCP patients
should have access to these individual consultants as a part of universal health care and
independently of the clinic.
All respondents mentioned that although many laboratory services and allied health
professional resources (physiotherapy, psychologists) are available, they may not be accessible
for all CNCP patients seen at their clinics (P3). One of the key informants provided the example
of physiotherapy services that might be available in the hospital for specific patients but not for
CNCP patients (P3). In the case where lab services are not available within the institution hosting
the clinic, the CNCP patient had to travel to a nearby hospital or clinic or to an institution,
located near where they live, where services are available (P2).
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7) Special Services for Impaired Population
None of these pain clinics had developed special services for physically and mentally
impaired patients, however the academic hospitals in which they are located can provide access
to such services if needed. But, P3 described the process to access those services as cumbersome
and time consuming, in order to facilitate the patients on time.
8) Referral Pathways
All pain clinics provide chronic pain assessment only upon medical referral of the CNCP
patient to the clinic. Each clinic had their own systematic referral form and system developed in-
house to meet their particular needs, however, there was a lot of variation in the patient/problem
description, the format and the process of these referral protocols. These forms ranged from one
page to a multi-page package that the referring or family physician had to fill out. P1 stated that
there is no standard practice for evaluating the relationship between the patient and the referring
physician. The process of accepting a patient is taken care of primarily by administrative staff.
The referrals are received based on pain clinical focus of the clinic and pain management
modalities they offered. The CNCP referrals generally are not prioritized in any way. However,
occasionally the referring physician does communicate in detail with clinic physician about the
severity of the patient’s illness. One key informant mentioned that they have more referrals from
within hospital than from family physicians outside the hospital. In that case, the in-hospital
referrals are from orthopaedic surgeons, neurosurgeons, post-trauma care specialists,
gynecologists, and gastroenterologists, with the majority of referrals for spine problems or
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musculoskeletal problems, the clinic’s specialty. Key informants reported that they recognized a
general pattern of referral from other specialists that reflected their expertise.
All key informants often referred certain types of CNCP patients to other clinics or
practitioners who specialize in specific conditions or pain management. P2 listed a number of
reasons that prompted referral to the other pain clinics. These included: presentation of
fibromyalgia, headaches, and auto-immune disease with chronic pain, CNCP with addiction, and
certain forms of interventional pain management that their clinics was not proficient in. Referrals
to non-pain specialists such as neurologists, urologists, gynecologists, psychiatrists,
gastroenterologists and respirologists were sometime made. All key informants often received
requests for in-patient consultation from their colleagues at the host hospital/institution.
9) Institutional Policies for CNCP Clinic
All key informants commented on the lack of pain assessment institutional policies,
protocol, procedures, and standards for CNCP services. All key informants mentioned there is no
specific written guideline for pain management practices from the hospitals or the institutions
that hosted their pain clinics. One key informant mentioned that they used certain standardized
forms and guidelines produced by the hospital but usually these were for in-patients or for
hospital procedure per se (P2). Two of the key informants mentioned that they used institution
consent forms for their out-patients (P2, P4). All key informants had developed their own semi-
structured protocol for patient evaluation, and the details of this protocol varied from clinic to
clinic. All pain clinics made use of standardized and structured questionnaires that were filled out
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by the patient before the clinic physician saw them. Some parts of these questionnaires included
validated and semi validated instruments, such as: the Opioid Risk Tool, the McGill Pain
Questionnaire and the Opioid Manager.
10) Adaptation and Use of Clinical Guidelines
At present, many physicians from different specialties (e.g. neurosurgery, neurology,
surgery, anesthesiology, psychiatry and physiotherapy) are involved in the care of pain patients in
these pain clinics. Therefore, all key informants mentioned that they use several local and
international guidelines, based on their needs i.e. medical management or procedural. For opioid
management all of them used the nationally developed Canadian Guideline for safe and effective
use of opioids. One key informant expressed an opinion that pain societies guidelines focused on
general pain management and that none offered guidelines for specific interventions. Some of
these pain clinics have adapted international guidelines according to their particular requirement.
One key informant viewed pain society guidelines as of limited use. On the one- hand, they are
targeted to practitioners who do not complete background knowledge of both medical
management and psychological interventions related to pain. On the other hand, pain specialists
practicing in pain clinics are already well aware of different published guidelines (P4).
11) Planning for Discharge and Continuity of care
Key informants expressed that, as very few CNCP patients are cured, complete
“discharge” from health services is unlikely to occur as a result of the care that they provide.
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They mentioned that there are multiple ways through which continuity of care is provided.
However all key informants overwhelmingly agreed that their interaction with the CNCP patient
is only for a limited time and eventually each patient has to be discharged form their clinic back
to the community for on-going management of their chronic condition. Patients who come back
to the clinic after certain time period are all considered new cases referred for a new complaint.
Discharging the CNCP patients back to the community is challenging for these pain
clinics practitioners (P2, P3), because of the view that many community physicians lacks the
skills, experience or resources to CNCP patients (P3). P3 expressed an opinion that in some
cases, by the time an acceptable level of pain management has been obtained, both patients and
their caregivers may have lost sight of who is responsible for on-going pain management,
particularly if a long time has elapsed between first referral, initiation of intervention(s), and
discharge from the clinic. Also, sometimes these patients stopped seeing their pain specialist
during the treatment period for personal reasons. All of the key informants reported that,
regardless of the way that these CNCP patient leave their care, the family physician and referring
doctors receive consultation notes and an evaluation summary along with the recommendation
for on-going pain management. However, key informants mentioned that they never received
any feedback or updates on the progress of the discharged patients (P2, P3, P4).
Summary of Delivery of Clinical Services
All pain clinics offered some unique service that was not available at other clinics in
Toronto
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None of those pain clinics function in an integrated, interdisciplinary manner
Effective services (medical and allied health) not available or accessible for most
patients.
Need to develop collaborative relationships between programs and services caring for
CNCP patients was recognized
Lack of health care resources and support from the affiliated institutions was noted
There are lengthy waitlists at all pain clinics
Discharge concerns and lack of continuity of care.
EDUCATIONAL Activities:
1) Funding Mechanism for Education
The key informants mentioned that there was no expectation or budget from their hospital
for providing pain education activities. Pain clinics had to find outside sponsors for such
activities or had to subsidize those activities through other revenue streams. One of the key
informant mentioned that they organized pain education rounds for family physicians, which was
usually funded through direct fund raising from various sponsors and stakeholders.
2) Education Prospects
All pain clinics provided fellowship training but this was managed under the umbrella of
different clinical departments such as anesthesiology or physical medicine and rehabilitation. All
pain clinics regardless of their department offered one-year pain fellowships but within the
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discipline of the clinical department in which they were located. Key informants from all pain
clinics offered self-funded fellowships to international medical graduates that provided
additional revenue for the clinic. These fellows go through specific assessment procedure and
interviews before being accepted. These fellowships are affiliated with a specific university and
department and have different protocols dependent on the primary department of origin.
However, none of these pain fellowships are structured or associated with a standardized
pathway, even though they are being carried out in a given clinic. All pain clinics host rotation of
students from different levels of medical education, such as specialty residents and from
divergent areas of medical practices i.e. family practice residents, second and third year medical
students’ electives, etc. For some of these students, this is an elective rotation and these students
stayed at the pain clinics from only two to four weeks.
The pain clinics also accepted less formal visits of international medical students and
physicians. All key informants stated there is no formal orientation in their pain clinic for those
visitors, however, before the students start at the pain clinic, they had usually attended the pain
rounds and had discussion with the pain specialist and their team. P4 mentioned that their clinic
focused on hands-on practical training for all their students and fellows. P1 stated that the
students and fellows are required to meet the clinical director for informal conversation and
direction, and are assigned to a leading pain physician associated with the clinic.
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3) Teaching and Training Practices
All key informant mentioned that there is no structured guideline or protocol for what
these different students and fellows should get out of their time in the clinic. Those trainees all
have quite varied background knowledge and skills. All students are affiliated with a specific
teaching institution and therefore, they follow the guideline of that institution or base hospitals.
Both P1 and P3 mentioned that the facilitating pain specialist generally discusses every patient
with the students and clarifies their queries. None of these pain clinics offered continuing
education programs. However, team members did attend different pain conferences about once a
year and claimed CME credits for the experience. Pain fellows are not certified after their pain
fellowship, because there is no such pain certification offered in Canada. P2 confirmed that
fellows are certified under the distinctive specialties of the departments where the clinic is
located.
4) Student Evaluation
P2 mentioned that all fellows are evaluated at 12 weeks relative to their performance on a
pre-entry assessment program. This assessment is carried out by the pain clinic leadership
assisted by other core members of the pain clinic. However, P2 admitted that these exams are not
rigorously structured or standardized. P1 stated that rotating elective students spend only a short
period at the pain clinics. Therefore, they had to be evaluated at a very limited level and there
was no evaluation on their pain management knowledge. Usually, it is only their participation at
the pain clinic that is verified on the forms supplied by their home institutions/universities.
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5) Pain Education Rounds
Three key informants mentioned that they organized educational rounds once a month in
which a Fellow or a resident speaks on a given topic. Other than this, there is no specific
structured pain educational activity. Pain as a topic is often not a major focus of the clinical
education programs available within the departments that host the clinics. The nature of those
pain lectures depended on which department or pain specialist organized the lecture or round.
One key informant shared his concern with the level of pain training of Canadian students as he
is associated with an international examination board and found that Canadian rate of success in
pain specialist exams is approximately the same as specialists trained in Iran. In addition, P4
expressed dissatisfaction with the pain training among family physicians in general, therefore
and felt that there is need for pain education for family physicians.
Summary of Educational Activities:
Lack of funding for educational activities
Need to develop structural educational programs for all level of students
Establish pain education within the curriculum of undergraduate and postgraduate
training programs
Need of coordinated and structured educational initiative for fellows and team members
Lack of continuing education programs for staff
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RESEARCH Activities:
1) Funding Mechanism for Research
Key informants mentioned that none of their clinics have dedicated budget for research
activities, except the salary of a research coordinator. Budget constraints within the pain clinics
and health system reported by pain specialists seemed to be the major contributing factor to the
shortages of well-designed clinical studies. Key informants were critical about the lack of
resources for research activities. Also, key informants indicating that there are no grants
available in pain clinics for student research activities, and that student conducting researches do
not get any remuneration for their activities. While students can try to apply to grants agencies or
their academic institutions, these are rarely successful.
2) Research Personnel
P1 and P2 reported their involvement in research projects at the time of this survey. Not
all pain specialists or their core team were involved in research activities on a regular basis. P2
and P3 stated that usually students and fellows are the ones involved in research activities, as it is
also part of their fellowship completion requirements. P1 and P3 stated that their clinics had a
fulltime research coordinator to administer the research activities and to assist the pain specialists
and fellows in their research activities. There was no reported formal collaboration and
communication among pain clinics for research activities.
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3) Research Productivity
Three key informants mentioned that their pain clinic focused on conducting research on
treatment approaches for all types of pain disorders. At the present time, the clinics were
conducting a variety of research studies ranging from retrospective, prospective follow up duties
to literature review on pain disorders. P1 mentioned that their pain clinic usually conducts
retrospective and chart reviews, due to lack of funding for prospective research. The length of
these clinical research studies varies, depending on what is being studied. The numbers of
publications published per year from these pain clinics varied from one to four. None of the pain
specialists interviewed published every year.
Summary of Research Activities:
Need funding for CNCP research
Need to promote and support research in pain
Research agenda should be developed to identify gaps in evidence of CNCP management
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7.3.2. Survey Results – Kuwait:
Background Key information;
Three men and one woman were the key informants selected from Kuwait.
Key informants ranged from 36-45 years of age =3, 45-55 years of age =1.
Practicing pain management from 5-15 years.
All of key informants involved in the care of chronic pain patients were Anesthesiologist.
All pain clinics were located in urban settings.
All graduated from English speaking universities and have training in pain management
from West.
Some form of multidisciplinary services provided (pain physician, a nurse, and a physical
therapist) at minimum.
Among these clinics, all reported that they offered services for the management of
chronic pain but these varied considerably from clinic to clinic.
INFRASTRUCTURE Utilization:
1) Organization and Conceptualization of Pain Care Clinic (use structural/architectural
terms)
As per our inclusion criteria, participants from Kuwait all were responsible for delivery
of chronic pain management services through pain clinics located in large government academic-
affiliated hospitals. An anesthesiologist assisted by a nurse assistant led each clinic. P1 and P2
commented that they have tried in the past to provide interdisciplinary or multi-disciplinary
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services but failed. P2 stated that the Ministry of Health has plans to make their clinics
multidisciplinary. P4 did report providing multidisciplinary services for the assessment and
treatment of chronic pain, but on an ad hoc, case-by-case basis.
All the pain clinics provided the following services: provision of assessment and
diagnosis, interventional and implementation of pathways to pain care. All clinics are under the
jurisdiction of Kuwait Ministry of Health. However, direct support varied in a way dependent on
the clinic's size and the services offered. For all participants, the major mode of delivery of
services for chronic pain was in an outpatient setting. However, the types and condition of CNCP
patients treated varied from clinic to clinic. Kuwaiti pain clinics offered a wide range of expertise
in pain management services for their patients. Key informants reported expertise included
pharmaceutical to interventional management for: low back pain and failed back surgery
management, ultra sound based blocks, acupuncture, spinal stimulators, intrathecal drug pumps
and radio frequency ablation. All pain specialists are paid as anesthesiologist through the
Ministry of Health. P1 mentioned that all provide chronic pain services as a matter of choice
since they do not receive additional income for providing those services.
All the services provided to the Kuwaitis are covered by universal health coverage
system. Non-Kuwaitis, such as migrant workers or their families pay for few services such as
MRI or CT, either through direct payment or indirectly via insurance company payments to the
clinics/hospitals. Indeed, two of the key informants reported running private practices to take
advantage of this additional source of revenue.
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2) Human Resources:
All clinics had an anesthesiologist and a nurse assistant as part of their core staff. Two of
the key informants mentioned that they had trainee anesthesiologist rotating through as a patient
registrar. One cited having trained a pain technician as an integrated part of their team. This
additional staff assisted the pain specialist in some case assessment or during intervention. All
key informants reiterated there were no other health care professionals that worked directly
within the clinics. However, P4 mentioned that although psychiatrists and psychologists are not
directly integrated into the pain clinic's staffing list, patients are regularly referred to such
specialists.
Pain physicians serve as the principal source of training at the pain clinics. Nurses and
other health care providers such as the registrar and pain technicians work under the supervision
of the principal physician at the pain clinic. Together they provide care at various levels: direct
treatment, prescribing medication and performing pain relief procedures. The numbers of hours
worked by pain specialists in these clinics varied from a day to three days per week. Similarly,
the days they spend doing small procedures and in operating rooms (OR) ranged from one to
three days a week. Nurses were involved in the management of chronic pain patients’ at all four
sites. P1 and P2 both mentioned that they trained their nurse assistants in specific pain
management procedures. The number of hours worked by nurses varied from a few days per
week to one or more full-time equivalent nurses. The nurses in all the pain clinics were involved
in providing assistance during the assessment and interventions. P2 mentioned nurses were also
involved in follow-up and administrative activities, including research. P4 mentioned that
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support also came from trainee patient registrars and pain technicians who became involved in
patients’ interventions/ procedures, follow-up, report writing and administrative duties.
Key informants reported that physiotherapists were available on all the hospital sites.
Only at one site were psychiatrist and psychologist services directly available to the pain clinic
through the host hospital, usually for cases dealing with spinal stimulators. P1 revealed that the
clinic had recruited a psychologist, however due to the complex nature of the chronic pain
patients seen at the clinic, the psychologist did not stay beyond a month.
With respect to secretarial support, in all clinics offering treatment to chronic pain
patients, nurses of their team undertook the administrative duties. P1 complained about a
shortage of human resource.
3) Pain clinic Space Allocations
All key informants reported that there are no separate rooms for consultation and
assessment. Both P1 and P2 reported that they do their assessment on the examination table,
which is provided in the corner of the consultation room. Two key informants mentioned that
they conduct small procedures in their clinics, whereas two key informants mentioned that they
have access to a separate room for small procedures. All key informants had specific days in OR
for complex procedures. However, P1 explained it takes many efforts to get those OR slots as
surgeons are given priority.
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None of the participants have routine access to in-patient’s beds. P1 mentioned that if a
patient does require one after the surgery or one is needed due to a special scenario, only1-3 beds
were available in the affiliated hospital. None of the pain clinics had a dedicated administrative
area, or a waiting area dedicated for chronic pain patients. Generally, it is one common waiting
area designated for a group of clinics, including the pain clinic.
4) Financial Support for Pain Clinics
All key informants mentioned that the Ministry of Health controls the clinic budget and
funding, and that they have direct involvement in negotiating that funding. There is no special
funding from the hospital for delivering chronic non-cancer pain services. All respondents
mentioned that in the last 5 years, the budget of the pain clinic from their host institution has
stayed either constant or increased only slightly. However, they all agreed that in the near future
the budget would have to increase, as they were to undertake to do more interventions that are
complex and see more CNCP patients.
5) Collaboration and Affiliation within Hospitals
Key informants stated that pain clinics were governed by the Ministry of Health and were
under the umbrella of anesthesia departments of major institutional/ hospitals. Even though these
key informants were academicians at the hospitals, their teaching had no affiliation with the
universities. Key informants expressed their disappointment in receiving no support from the
institution or Ministry for the advancement of these pain clinics. P2 reiterated that the director of
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the institution likely was unaware the institution hosted a pain clinic. Key informants P1 and P2
were both of the opinion that the pain clinics were established and operating only as the result of
their individual efforts and interest.
All key informants mentioned that there is no formal affiliation or collaboration between
pain clinics, except referring complicated cases back and forth. P1 and P2 expressed their
disappointment, as there was no communication between the pain specialists, due to each being
busy providing other services. Key informants mentioned that they have formed a national pain
society called “Pain Kuwait Society”; however, it was not active at the moment. As all the pain
specialist are anesthesiologists and, P1 mentioned that, they meet regularly at anesthesiology
council meetings. P1 shared his frustration that a proposal to establish a chronic pain center for
Kuwait had been rejected repeatedly by the government and believed that this accounted for
reduced enthusiasm of pain specialist for a collaborative center and has caused them to focus on
private pain practice opportunities. One key informant commented that pain specialists were
trained abroad in unique ways and each of them have their own ways of managing CNCP
patients. They each recognized the opportunities that might emerge from combining their
different skill sets for the benefit of the larger communities of pain patients in Kuwait. P4
mentioned that this was the rationale they put forth behind the proposal for national pain center,
which was however, rejected.
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6) Access to Resources for Delivering CNCP services
All key informants were able to access to all laboratories for blood work, x-rays, MRIs, and
equipment for pain management, within premises or nearby hospitals. However, pain clinics on
their own had no such facilities. Two key informants shared their struggle for electromyography/
nerve conduction facility, which is not easily available in all hospitals. All these facilities are
provided free of charge for Kuwaiti patients but non-Kuwaiti patients have to pay a minimum fee
to access some of these services. P2 stated that there was no facility for drug testing in Kuwait.
With regards to equipment used in pain clinics for patients, it was not directly under the control
of the clinic and must be requested through others. P1 and P4 specified that they received access
to needed equipment only after being persistent about it.
Summary of Infrastructure Salient Issues:
Pain specialist belong to a single health care discipline (Anesthesia), with a focused
practice
Budget and funding is controlled by Ministry of Health; there is no direct budget from the
hospital
General resources, staff and space allocation are insufficient
Governance structure and collaboration within hospital and outside are crucial to improve
pain management
Access to resources is needed for better and more coordinated delivery of pain care.
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Delivery of CLINICAL SERVICES:
1) Delivery of CNCP Services at Out-patient Setting
P2 stated the business hours of the all pain clinics in an out-patient setting were between
8:00 am-2:00 pm. One clinic operated every day of the week. P1, P2, P3 stated that they spent
seven hours per week in the assessment of chronic pain patients (while P4 reported spending 14
hours per week).
2) Workload and Waiting Time
As reported by key informants, there are three types of patients, new patients, follow-up
after a procedure; and regular follow-up patients. Key informants mentioned that the total
number of new cases of chronic pain evaluated in the CNCP clinics varied for each pain
specialist. P1 assessed only 2 new CNCP patients per week while others assessed 10 to 20 per
week. All pain clinics asked the new patients to fill out a structured questionnaire on their first
visit. The duration of assessment of a new patient by three key informants was 10-30 minutes on
their first visit. Due to time limitation, they were unable to get into details of the patient’s
personal or social life during that consultation. However, P1 devoted 75 minutes to patient
assessment on the first visit. Based on that assessment P1 then made a decision for further
investigation, consultations or treatment recommendations.
P1, P2, P3 reported that new patients waited approximately one to six months for their
first appointment at the pain service. They mentioned that about 7 to 45 new patients are always
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on their waiting list. P2 on the other hand immediately responded to the patient’s referral and
saw the patient right away. All key informants conducted procedures and spent 2-3 days in OR.
Some of these key informants conducted small procedures in their clinics, others did all types of
their procedures in the OR. P4 suggested that 15 small injections (e.g. trigger points) or only 2
complex procedure (such as stimulator, pump) can be done in a day.
If a patient was booked for a procedure, the pain specialist sees the patients after the
procedure in a follow-up visit. The volume of patients per year in a follow-up visits ranged
approximately from 500 -750 patients’ in these pain clinics. However, the type and volume of
follow-up (procedure or normal patient) were mixed every week, depending upon the activities
of the clinic. P4 reported spending approximately 10-15 minutes on each follow-up evaluation.
All key informants mentioned that they offered follow-up to patients for indefinite period. The
follow up of patients was based on their need and pain specialists’ judgement ranging from 2-6
months. Both P3 and P4 mentioned that if the pain was stable for the patient and they needed
only their medication (prescription) supply, they did not have to come for a follow up but could
get it through an assistant.
P1 mentioned that in order to lessen the burden on pain specialists, the Ministry of Health
had tried to implement a process of directing chronic pain patients to their GPs for a continuous
prescribing regime. However, neither that key informant nor their colleagues had implemented
those services, due to their own fears and hesitations. P1 revealed that there was some loss of
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CNCP patients in follow-up, due either to the patient getting better, being dissatisfied with the
services provided and looking for another doctor, or possibility of death.
Only one clinic offered in-patient services for management of complex patient needs and
they admitted 80 patients per year for complex pain management. Other clinics did not offer any
in-patient services. P1 mentioned that where there is urgent need for admitting a CNCP patient,
they have to request other specialties i.e. medicine or surgery to admit their patient. P1
mentioned that pain specialists provided in-patients consultation through the acute pain services,
as a favor to their colleagues or if the hospital asked them to do so.
P4 emphasized the need of having more pain specialists as presently there were nine
Kuwaiti pain specialists and all of them are from anesthesia and intensive care. All of them have
additional responsibilities such as leading and managing the departments. P2 and P3 were also
involved with delivery of pain management services at other private pain clinics (P2, P3).
All key informants felt that CNCP patients come with unrealistic expectations, which
were difficult to follow. For example, patients may want their pain cured or eliminated. Key
informants try to make them set realistic goals, such as restore functionality or manage pain
better. They treat their CNCP patients with pharmacological options for primary pain complaints,
which were related to biomedical condition. Even though they were very well aware of non-
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pharmacological modalities and their benefits, P1, P2 and P3 were unable to provided
interventional and other alternatives that are feasible.
3) Types of Patient Care Delivered
The most frequent types of chronic pain encountered across the all pain clinics were back
pain followed by musculoskeletal (MSK) pain, and neuropathic pain. Two key informants
mentioned that they have extensive referrals for failed back surgery syndrome from surgeons.
Each pain clinic services focused on different CNCP condition: for e.g., from musculoskeletal
pain, chronic pancreatitis, Crohn’s to neuropathic pain, to post-surgical pain, spine related
problem and its management; to failed back surgery syndrome for spinal simulators. Except for
P2who sees younger CNCP patients between the ages of 20-30 years, all other key informants
see heterogeneous population, middle age, primarily women. Interestingly, P2 estimated that
70% of the musculoskeletal pain cases seen are related to lack of exercise and general inactivity.
4) Treatment Modalities Offered At the Pain Program
All pain clinics offered a variety of pharmacological and interventional therapies. The
pattern of CNCP management of interventional pain specialists has diversified. The varieties of
pain specialist included performance of different kind of injections and blocks. This was done on
an outpatient and same day surgery basis. P3 and P4 mentioned that they offered spinal
stimulators and one (P1) offered acupuncture. None of these pain clinics offered on-going
psychological treatment or any alternative treatment such as massage therapy, or manual
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services. In the present survey, it was found that there was a wide variation in the practice of
different procedures, as well as use of pharmacological and opioid prescriptions. All
pharmaceutical compounds from NSAIDs to anticonvulsants were available for Kuwaiti national
patients. P1 commented that these compounds were available to non –Kuwaitis for a small fee or
entirely covered through third party insurance. P1 and P2 mentioned that new generation
compounds such as Pregabalin and celecoxib and newer opioids, were only available to
Kuwaitis.
P1 mentioned that only some hospitals allowed access to opioids and only some pain
specialists made use of this mode of pain management in their practice. There was a high level of
government regulation over opioid accessibility and there were restrictions from the government
on availability of certain opioids prescription. P1 emphasized their hesitation and fear for
prescribing opioids, due to government’s strict policies. They preferred a combination of pain
relievers for their patients. P4 preferred installing an expensive intrathecal pump instead of
prescribing high doses of oral opioids.
P4 revealed that many patients with failed back surgery were referred and were the best
candidates for spinal simulators. The respondent stated that the cost of the instrument only was
30,000 KD (CND$99,453) and the whole procedure was expensive. Not many patients are able
to pay for this out of pocket, but they have the option of approaching an insurance company or if
the patient is a Kuwaiti then he/she can be referred through a government process.
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4) Clinical Activities of Pain clinics
None of these pain clinics held regular meetings to discuss clinical cases with their team
member i.e. nurses, or held regular meetings to review clinical progress or management issues.
However, P3 did organize regular staff meeting sometimes to audit their clinic routine. All key
informants mentioned that they consulted or had informal meetings with other physicians and
allied professionals, to discuss the course of action for any complex CNCP patient or the
procedure, if needed. P1 mentioned that they hosted general rounds for anesthesia but nothing
specifically dedicated for pain (P1). All key informants indicated that they believed collaboration
among pain clinics would help to extend the scope and coverage of services provided to CNCP
patients in Kuwait.
Coordination of Care
Key informants reported that the pain clinics are part of the hospital, therefore, all kinds
of other medical teams and individual medical specialists are available for consultation at the
hospital premises. All CNCP patients have access to these individual consultants as a part of
universal health care. All respondents mentioned that there are few allied health professional
resources (e.g. physiotherapy, psychologists) available but it may not be accessible for all
patients. CNCP patients have to travel to a particular or a nearby or within their community
hospital to access certain lab services that were not available at their regular hospital
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7) Special Services for Impaired Population
Special services for physically and mentally impaired patients were difficult to find in the
pain clinics but they were accommodated, if possible.
8) Referral Pathways
All pain clinics provided chronic pain assessment or case identification only upon referral
of a CNCP patient to their clinic from other specialists. Each clinic received many referrals from
all different specialist and allied health professionals and departments. A majority of these
referrals were from within the hospitals. P1, P2 and P3 all revealed that they did not receive
many referrals from GPs due to lack of awareness about presence of pain management clinics. In
fact, P2 stated that in 8 years of practice no single GP referral had been received by their pain
clinic.
Each clinic has their own systematic referral form and system developed in-house to meet
their particular needs. However, there is a lot of variation in the patient/problem description, the
format and the process of these referral protocols. These forms ranged from one single to two
pages that were filled out by the referring or family physician. However, P4 mentioned that many
physicians just wrote few lines without explaining the whole pain condition of the patient. P4
also mentioned that some patients came to them based on word of mouth about the pain clinic
from other patients and the pain clinic accepted them. In addition, many referrals came from the
neighboring countries in the Gulf region. Another important finding from this survey was that
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some of these pain clinics were established near the neurosurgery department, so that a
neurosurgeon is available to them immediately for neurosurgical consultation and assessment.
P1 mentioned that the process of accepting a patient is taken care of primarily by nurses.
The referrals were received based on pain specialist expertise and pain management modalities
they offered. These referrals generally were not prioritized in any way and there were no
preferences of Kuwaiti over non-Kuwaiti. However, occasionally in cases of urgency, the
referring physicians did communicate in detail with pain clinic physician about the severity of
the patient’s illness, to prioritize the consultation. All key informants often referred their CNCP
patients to other pain practitioners who specialize in a specific condition or particular pain
management strategy. Key informants often received requests for in-patient consultancy from
their hospitals.
9) Institutional Policies for CNCP Clinics
All key informants highlighted the lack of pain institutional policies, protocols,
procedures and standards for CNCP services. They also mentioned the lack of written guidelines
for pain management practices in the hospitals or the institutions. All the pain clinics had a
standardized and structured questionnaire to be filled out by the patients before seen by the
physician. P1 and P4 mentioned that some part of these questionnaires was developed with
validated and semi validated published instruments used for pain scores, sleep scores and quality
of life.
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10) Adaptation and Use of Clinical Guidelines
All key informants adapted to the international guidelines, based on their needs i.e.
management or procedural. P1 expressed an opinion about the gaps in the guidelines and thus
used them as a reference only. Although all of them adopted the state guidelines where they were
trained, the most commonly used guidelines were from IASP and WHO.
11) Planning for Discharge and Continuity of care
All key informants found that there was continuity of care until these patients were cured
and then discharge. Pain clinic specialists found discharging patients to a community clinic or
GPs was difficult because CNCP patients often had complex cases that required lot of support
and direction. P1 and P2 felt that the GPs would have inadequate ability to deal with these
patients and lacked sufficient chronic pain management knowledge. Although records of all
CNCP patients were kept as per hospital policy, P4 mentioned the clinic nurse also archived
records of patients that had left the clinic in case they returned.
Summary of Delivery of Clinical Services
• Variation in clinical practice of pain specialists (number of patients seen, wait time,
consultation time, follow-up time, type of patient seen, modalities offered, referral
formats.).
• Effective drugs or non-drug modalities not available or accessible to all patients.
• Need of medical professionals and allied health care from diverse fields dedicated to the
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ongoing and integrated care of patient.
• Views about the gaps in the international guidelines.
• Lack of referral connections between general physicians and pain specialists.
• Ongoing longitudinal care provided by a pain specialist.
EDUCATIONAL Activities:
1) Funding Mechanism for Education
Key informants can request funding of the pain educational activities, though there is no
dedicated budget for pain educational activities in the hospital or by the government.
2) Education Prospects
All key informants stated that there is no pain fellowship offered in Kuwait. They explained that
Kuwait Institute of Medical Specialization (KIMS) offers fellowship based on structured
services, and follow systematic guidelines and protocol. P1 mentioned that even if any program
director takes the initiative for this fellowship, pain clinics do not have these kind of regimens.
Two of the key informants stated that their registrars are working anesthesiologists who become
trainees for six months without any prior pain management training. They get a new registrar
every six months. P3 and P4 mentioned that responsibility for recruiting and filling the clinic's
registrar post comes under the umbrella of the Anesthesiology department and its fellowship
program. The Anesthesiology department in every institution offers pain management training as
a clinical rotation for just six month following completion of an anesthesiology fellowship-
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training program. Each anesthesiology department has a structured training guide based on
which they evaluate their students on pain management clinics rotation. Residents from the
hospitals are sent to do a pain management program and the key informants train them. KIMS
provides budget for all these training positions. According to P3, the Anesthesiology fellowship
programs in Kuwait are in their infancy.
3) Teaching and Training Practices
Key informants divulged that there were no structured trainee pain clinic guidelines or
protocols for students and fellows while spending their time in the pain clinic. Thus, trainees
follow the guidelines specified by their teaching institution, which is under the department of
Anesthesiology. Students attend the pain clinics and OR with the pain specialist to observe the
pain management process. P1 generally discusses every patient with the students to clarify any
queries they have. P1 also mentioned that the Kuwaiti Board of Anesthesia is managed by a
program director who appoints a moderator to supervise the overall program for the trainees.
That moderator then establishes the objectives of the rotation.
None of the pain clinics offers a continuing education program to their nurses or other
staff. However, P3 mentioned that pain specialists are allowed and funded to attend pain
conferences, once a year to update their knowledge. They also try to organize national pain
conference once a year and several small workshops for awareness and educational purposes.
Sometimes private companies offer workshops abroad for training of specific equipment used for
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treating pain. P1 suggested that the motives behind these workshops are primarily to sell the
equipment to the physicians.
P4 invited a team of scholars and clinicians from their former training center abroad
once or twice a year to update their knowledge and learn about new procedural techniques that
would assist them for complicated cases. Subsequently P4 would share this knowledge with
anesthesia staff and trainees through lectures. P1 was of the opinion that establishing
standardized protocol and local guidelines would be difficult because the medical fraternity uses
liberally interventional procedures and tries out latest technology coming to the market rather
than participating in an organized and comprehensive approach. Many of these procedures
should not be conducted until other pain management modalities have been tested on the
patients. The respondent shared experience of seeing many patients who have been treated with
procedures they did not need and may have suffered unnecessarily.
P1 was also worried about medical physicians taking short courses and considering
themselves to have sufficient specialized training to start treating the patients with chronic pain.
P3 expressed hope for the future with respect to the quality of pain management provision as
these newcomers had already initiated it at an individual level.
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4) Student Evaluation
Key informants reported that there is no assessment mechanism at the pain clinic and
students were evaluated within their anesthesiology department for their pain management
knowledge.
5) Pain Education Rounds
Key informants noted that fellows or residents on the educational round of anesthesia
were given a topic to present, not necessarily on pain. Other than this, there is no specific
structured educational activity. P3 mentioned that they participated in general rounds for
anesthesia but these were not specifically concerned with pain. P1 mentioned that if pain
specialists felt a need for discussion on any particular case or procedure, they did so informally.
6) Need of Education and Awareness
P1 stated that the lack of knowledge and training for healthcare workers, general
physicians and the population resulted in inadequate provision of pain treatment services in
Kuwait (P1). Many medical professionals treated CNCP patients by themselves as they had as
yet not realized that pain management is a specialty with practitioners available to them in
Kuwait. Both P2 and P3 mentioned that medical professionals only discovered that pain
specialists exist when the need arose because one of their patients presented a complex condition
involving chronic pain. P2 expressed his/her desire to see delivery of pain management practices
in Kuwait similar to those found in the West where they were trained by educating local medical
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professionals and making the public aware about modern understanding of pain and its
management.
Summary of Educational Activities
• Inadequate opportunities for education and training in CNCP within postgraduate
programs
• Insufficient opening in CNCP education for Continuing Health Education for practicing
professionals
• Need of accreditation for healthcare providers to deliver CNCP care.
• Desire to educate medical professionals and help the public to be aware of pain and its
management.
RESEARCH Activities:
1) Funding Mechanism for Research
All key informants stated that there was no dedicated budget available for research of
CNCP management. P1 was critical about the lack of information from government on the
funding resources and noted that a proactive approach was required for discovering opportunities
for research funding from the government.
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2) Research Personnel
Only two key informants reported their involvement in research projects at the time of
this survey. One of those informants had a policy of having the multi-site clinical research or trial
coordinated by a clinic nurse but that their contribution was not mentioned on manuscripts,
submitted for the publication.
3) Research Productivity
P1 related that their pain clinic focused on conducting epidemiological research on
service and patient satisfaction. P4 was more involved in multi-site clinical trials for equipment
and treatment approaches for CNCP. The numbers of publications published from these pain
clinics over the last 5 years were 4 and 5, respectively. P3 found that lengthy and complicated
procedures for getting informed consent from patients, and approval from ethical research boards
discouraged research.
Summary of Research Activities
There is no dedicated funding for research
No organized system to conduct research.
There are several obstacles to conduct the research
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7.3.3. Survey Results -Karachi:
Based on personal information;
Three men and one woman were the key informants selected from Karachi
All key informants ranged from 46 to 55 years of age.
Practicing pain management from 5-15 years.
All pain clinics were located in urban settings.
All key informants involved in the care of chronic pain patients were anesthesiologists.
Graduated from English speaking universities and have training in pain management.
Two of them trained in the UK.
All the clinics were located in large university-affiliated hospitals.
Some form of multidisciplinary services provided (pain physician, a nurse, and a physical
therapist) at minimum.
All reported that they offered services for the management of chronic pain but these
varied considerably.
INFRASTRUCTURE Utilization:
1) Organization and Conceptualization of Pain Care Clinic (use structural/architectural
terms)
As per our inclusion criteria, two of the participants located in government academic-
affiliated hospitals and two participants from charity-run hospitals in Karachi were responsible
for delivery of chronic pain management services through pain clinics. Each of these pain clinics
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treated various kind of patients from acute to cancer to CNCP patients, however due to our
research interest, they provided all the information related to CNCP services. An anesthesiologist
with their clinical fellows led each clinic. P1 stated that they are trying to provide a multi-
disciplinary service for CNCP patients, through better collaboration with other specialists in their
hospital (P1).
All the pain clinics provided the following services: provision of assessment and
diagnosis, interventional services and implementation of pathways to pain care. For all
participants, the major mode of delivery of services for chronic pain was in an outpatient setting.
Government affiliated-hospitals pain clinics were under the jurisdiction of Province of Sindh,
whereas charitable-institutions have Institutional boards and committees for all decisions. The
types of patients treated varied from clinic to clinic. Karachi pain clinics offered a wide range of
expertise in pain management services for their patients. Participants reported a list of their
expertise from pharmaceutical to interventional management that included: Prolapses disc, low
back pain, and failed back surgery syndrome. All pain specialists interviewed were
anesthesiologists with fulltime employment in their institutions. They each emphasized that they
initiated their pain clinics because of their personal interest in the chronic pain. They were not
instructed to do by their institution. In government hospitals, all services provided in the clinics
are free of cost to CNCP patients, covered by the government or by direct donations from friends
or supporters or local community charities (P1). On the other hand charity-hospitals provide
services at a nominal cost and if the patients are unable to pay, depending on the patient’s socio-
economic status the nominal cost can be further reduced from 30% -100% (P3, P4). All the key
informants reported running private practices, in the evenings.
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2) Human Resources:
All clinics had only anesthesiologists as the core staff. However, during patient
assessment or intervention, on-call rotating fellows training in the anesthesiology clinical
fellowship program supported all key informants. The numbers of these fellows ranged from 2-
16. P1 stated that they have female paramedics to assist with female CNCP patients (P1). In
these pain clinics, there were no other specialists or allied health care professionals working
directly with the pain specialists. Pain physicians serve as the principal treating physicians at the
pain clinics and the clinical fellows working in the clinic do so under their supervision. Together
they provide care at various levels: direct treatment, prescribing medication and performing pain
relief procedures. The numbers of hours worked by pain specialists in these clinics vary from 1-5
days per week. Similarly, the days they spend doing the small procedures and in operating rooms
(OR) vary. Female staff were involved as a paramedics or physician’s assistant in two
government pain clinics. In the charity-hospitals, no nurses were dedicated to pain clinics.
However, if needed the pain specialist can request nursing assistance during small procedures or
in the OR. A key informant struggled with the workload due to lack of nursing staff (P4).
Participants reported that physiotherapists were available at all the hospital sites for all CNCP
patients. All sites acknowledged the availability of a psychiatrist for a specific case but no
availability of a psychologist with in the hospital.
Administrative support was available to all pain specialists offering treatment to CNCP
patients. The number of administrative staff in the pain clinic was generally 1 to 2 individuals,
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although one had 4 administrative staff. P3 mentioned that although administrative staff may not
be dedicated to the pain clinics, they could be accessed if there is a need.
3) Pain Clinic Space Allocations
All the key informants reported that the consultation and assessment were conducted in
one room. They do their assessment on the examination table, which is provided in the corner of
the consultation room. All key informants mentioned that they have access to the OR for small or
complex procedures, however, one key informant mentioned that this is not automatic and access
is at the discretion of the surgical department (P1). None of the key informant’s reported routine
access to in-patient’s beds. If patients do require a bed after a procedure that carried out by the
pain specialist, they generally can get access to 1-3 beds in the affiliated hospital (P3). This is not
always sufficient, resulting in increasing wait times for interventions. No clinic had an
administrative area, or waiting area dedicated for CNCP patients visiting the clinics. Generally,
CNCP patients needed to wait in a common area designated for a group of clinics, including the
pain clinic.
4) Financial Support for Pain Clinics
All key informants revealed that the budget and funding of the pain clinic is controlled by
their affiliated institutions/hospitals, and there is no special funding for the pain clinics. These
have stayed constant in the past five years even though costs have increased.
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5) Collaboration and Affiliation within Hospitals
Key informants stated that all pain clinics were under the umbrella of Anesthesia
department of the associated institution or hospital. Three key informants were academicians at
the hospitals and affiliated with some medical college or universities in Pakistan. All key
informants were in agreement that the only reason their pain clinics existed was because of the
pain specialist’s desire to open and run such a clinic.
They also stated that there is no formal collaboration between pain clinics, except
discussing complex patients, if needed. Nevertheless, P1 and P2 felt that their institutions were
trying to be supportive in finding equipment and facilities, despite serious constraints.
6) Access to Resources for Delivering CNCP services
All key informants were in agreement with respect to adequate access to all laboratories
for blood work, x-rays, MRIs, and equipment for pain management, within their hospital or at
least at nearby hospitals. However, pain clinics had no priority in accessing those services. One
key informant mentioned that the location of his hospital outside of the city posed an access
challenge for CNCP patients (P4). All key informants stated that they have access to most of the
equipment needed to carry out their works but not to all the equipment. P3 and P4 specified that
they received the much needed equipment only after making persistent requests. The other two
key informants stated that sometimes they secured their needed equipment and supplies from
alternative resources, for e.g. charitable organizations or pharmaceutical industries (P1, P2).
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A key informant stated that sometimes sophisticated equipment was made accessible to them by
the institution but was not used due to lack of time, human resources or training (P1). All key
informants highlighted the struggle they faced in managing their daily consumption and
replenishment of supplies used for the CNCP patients i.e. medication, needles, injection etc.
Summary of Infrastructure Salient Issues:
• Pain specialist belong to a single health care discipline (Anesthesia), pain specialists were
focused on interventional practice
• Lack of budget and funding for CNCP services. Budget controlled by hospitals
• General resources, staff, space allocation are inadequate
• No specific organizational structure, governance and collaboration among pain clinics
• Access to resources is needed for the better delivery of pain care.
Delivery of CLINICAL SERVICES:
1) Delivery of CNCP Services at Out-Patient Setting
The business hours of the two pain clinics located in government affiliated hospitals in an
out-patient setting were between 9:00 am-2:00 pm, whereas in charity- hospitals, the pain clinics
were scheduled in the morning hours on an ad hoc basis. None of these key informants
performed procedures in the OR every day of the week.
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2) Workload and Waiting Time
There are three types of patients, new patients, a regular follow-up patients and a follow-
up visit after an interventional procedure. The total number of new cases of chronic pain
evaluated in the CNCP clinics varied for each pain specialist. One pain specialist assessed 10
new CNCP patients per day (P2) while others assessed ranging from 2-4 CNCP patient per day.
Only one clinic that was hosted by government hospitals had a standardized assessment form.
The residents working with the pain specialist filled these assessment forms. All key informants
stated that most patients in these pain clinics were of low-socioeconomic status and were not
educated, while one key informant from government-affiliated hospital also attended to 4-6 new
patients every month from a more privileged and educated cohorts drawn from the elite class or
government employees (P1).
For the visit of a new patient, the clinical fellows carried out the initial assessment for 10-
15 minutes followed by an assessment from the pain specialists for 10-30 minutes. One key
informant discussed pressures from the clinic managers in giving less time to CNCP patients and
seeing more patients within the clinic hours (P4).
There is no appointment needed to consult the pain specialist as they are seen on first
come first serve basis and there is no wait time for the assessment in these pain clinics. Patients
can arrange the appointment beforehand but have to wait as the consultant may be busy with
other patients or other tasks (P3). All key informants conducted procedures and spent 1-3 days in
the OR to do small and complex specific procedures for CNCP patients.
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The volume of patients in regular follow-up visits range from 3 -30 CNCP patients/per
day in these pain clinics. However, the type and volume of follow-up (procedure or normal) is
mixed every week, depending upon the activities of the clinic. A pain specialist spends approx.
10 minutes on each follow-up evaluation. If a patient was booked for a procedure, the pain
specialist also would see that patient after the procedure in a follow-up visit. All key informants
acknowledged that many of their CNCP patients never showed up for follow-ups appointments.
They have no way of tracking why this was so but speculated that travel was difficult of simply
that the first visit was sufficient to help them live with their pain (P2). The average timing for the
patients’ follow-up visit ranged between 3-25 days between clinics. After interventional
procedures the pain specialist will emphasize the importance of a follow-up visit (P2). One of the
key informants mentioned that in-patient or admitting the patient for CNCP management is not
common practice in Pakistan (P3). Clinics do not offer any in-patient services, however, one key
informant stated that if a hospital asked them, they provide in-patients consultancy (P2).
3) Types of Patient Care Delivered
The most frequent types of chronic pain encountered across all pain clinics were back
pain followed by musculo-skeletal pain, and neuropathic pain, while two key informants stated
their clinics have 75-80% of patients with chronic back pain. All key informants specified that
surgeons refer patients for low back pain and joint pain to them. Each pain clinic service focused
on different CNCP condition, from knee joint pain and shoulder pain to neuropathic to different
kinds of arthritis to sacroiliac joint involving the back and the legs and buttocks. All key
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informants cater to low-socio economic, middle age, and heterogeneous population,
predominately women.
4) Treatment Modalities Offered At the Pain Program
All pain clinics offered a variety of pharmacological and interventional therapies. The
pattern of CNCP management of the interventional pain specialist was diversified. The
interventions were focused mostly on different kind of injections and blocks. The interventions
were carried out on an outpatient basis and same day surgery. A key informant mentioned that he
had trained in the delivery of acupuncture to release pain. However, that practice had been
discontinued due to lack of supplies (P1). None of the key informants referred any of their
patients for rehabilitative treatments such as psycho-therapy or massage. However, two key
informants cited that psychological modalities were available in the psychiatric department
within their institution and they did refer some of their CNCP patients to that department (P1,
P2). This present survey discovered a wide variation in the practice of different procedures, as
well as use of pharmacological and limited weak opioid prescriptions. All pharmaceutical
compounds such as NSAIDs, anticonvulsant and opioids are available in Karachi, but access to
them is limited. Key informants disagreed on the consequences of the limited availability and
accessibility of opioids in Karachi. Key informants mentioned that only weak opioids were
available in the pharmacies to treat CNCP patients’ i.e. tramadol, buprenorphine. A key
informant emphasized that Karachi being a global city, has only two pharmacies that dispensed
strong opioids and only in the liquid form for the ICU patient and the post- surgical patient.
Sometimes, these special pharmacies do not have strong opioids and if they are available, it is
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only in the form of the morphine tablets (P1, P3). There is a strong regulatory oversight by
government of opioid accessibility. Key informants mentioned the associated long and painful
documentation process as a barrier for physicians and hospitals in prescribing opioids. This led
to a preference for prescribing a combination of non-opioid pain relievers for their patients (P2,
P3, P4). Another key informant described the regulation process of acquiring the prescribing
license for opioids as a lengthy process. A participant revealed that each pain physician had to
register first with the government then at a particular pharmacy, and ensure that there is sample
of their signature at that pharmacy, to prescribe strong opioids (P1).
4) Clinical Activities of Pain clinics
If needed, all key informants consulted or had informal meetings with others physicians
and allied professionals to discuss the course of action for any complex CNCP patient or their
procedures. Two key informants mentioned that they hosted general rounds for Anesthesia in the
hospitals where they invited other consultants however, pain was only sometimes discussed (P1,
P2).
Coordination of Care
Pain clinics are situated in the premises of the affiliated hospitals where all kind of other
medical teams and individual medical specialist are available for consultation therefore the
patients were referred within the hospitals. Pain specialists and CNCP patients have access to
individual consultants. A key informant expressed accessibility of consultation to other specialist
being hindered as most of them only worked part-time in the hospital (P4). Key informants stated
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that despite time limitation, they coordinate the care by contacting each other and providing their
feedback on an ad hoc basis (P4).
7) Special Services for Impaired Population
There is no reported availability of special services for physically or mentally impaired
patients in any of the pain clinics surveyed. However, one key informant expressed hope that
these services would be available in the near future (P3).
8) Referral Pathways
Each clinic received many referrals from all different specialist and allied health
professionals and departments. A majority of these referrals are from within the hospitals.
Interestingly, key informants revealed that they receive few (10%) of referrals from general
practitioners. This likely reflects a lack of awareness about their pain management program since
those general practitioners who do so have generally worked previously in a large tertiary care
setting. The referral notes in pain clinics ranged from one single line to one page filled out by
the referring physicians, except for one pain clinic where one page is mandatory for referral note
related to patient’s history, physical examination and any other investigations that were carried
out. None of the other pain clinics had any systematic referral procedures. One participant was
frustrated about referring physicians’ inadequacy in providing the details of CNCP patient’s
conditions (P1). The referrals received were targeted to the pain specialists’ known expertise and
the pain management modalities they offered (P2). Depending on the needs of the CNCP patient,
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the key informants often referred them to other consultants who specialized in specific condition
or pain management. Key informants often received requests for in-patient consultation from
their hospitals. Before assessing an internal patient for pain, two key informants discussed the
importance of documentation of CNCP patient conditions and stressed the importance of
complete referral notes (P3, P4).
9) Institutional Policies for CNCP Clinics
All key informants emphasized that there were few institutional policies, protocols,
procedures and standards that referred specifically to CNCP services. P4 cited that pain
management is at infancy at their pain clinic.
10) Adaptation and Use of Clinical Guidelines
All the key informants used the guidelines from where they were trained and practiced
internationally. While adapting to the international guidelines, based on their own management
or procedural needs, the most commonly used guidelines were from IASP and WHO (P1, P3,
P4).
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11) Planning for Discharge and Continuity of care
Key informants mentioned that there was no continuity of care protocols at their
institutions. Often, the only indication of continued satisfaction is that some former patients that
they have lost track of refer their relatives to the clinic (P3).
Summary of Delivery of Clinical Services
• Variation in clinical practice of pain specialists (no of patients seen, wait time,
consultation time, follow-up time, type of patient seen , modalities offered, referral
formats.)
• Effective drugs or non-drug modalities not available or accessible to CNCP patients.
• Lack of availability and accessibility of appropriate opioids
• Too many regulations for opioid prescription
• Need for medical professionals and allied health care from diverse fields dedicated to
ongoing and integrated care of patient
• Lack of referral connections between general physicians and pain specialists
• Discontinuity of care, without updating the status of CNCP condition with the attending
pain specialist
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EDUCATIONAL Activities:
1) Funding Mechanism for Education
According to the key informants, there was no dedicated budget for pain educational
activities, in the hospital or from the government. However, some pharmaceutical companies and
affiliated universities supported the pain program for carrying out the educational activities.
2) Education Prospects
Participants reported that there are no pain fellowship programs offered in any of the pain
clinics in Karachi. Two key informants revealed that they were trying to establish such a
fellowship program, to be offered only to anesthesiology fellows as a sub specialty (P1, P2). The
key informants from all pain clinics trained residents and clinical fellows but only within the
context of expectation by the department of Anesthesiology. Two key informants reported having
2-4 students or fellows fulfilling their clinical requirement in the local hospitals under their
supervision while enrolled in a distance education MSc program in Pain Medicine. A University
in another province oversaw this program, but the key informants supervised research projects
that were required of students enrolled in that program (P1, P2). In one-pain clinic, these students
are the employees of the hospital or government and in one they are working without
remuneration. A key informant showed a willingness to recruit trainees and fellows for their pain
clinic, but only if they were provided the institutional support (P3). This respondent discussed
the barriers of recruiting such trainees including lack of funding, pain awareness and support
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from the institution. The institution feared pain clinicians would spend more time with the
student and in research than in providing clinical services.
3) Teaching and Training Practices
P1, P2 with trainees mentioned that they had no dedicated protocol provide guidelines for
how that training was to be delivered within their pain clinics, however they did use the affiliated
university guidelines. All key informants provided informal hands-on training to their clinical
fellows and other rotating students. None of the pain clinics offered a continuing education
program for staff affiliated with the clinic. A key informant emphasized the importance of
continuing education, by updating their training abroad (P3). Pain specialists attend pain
conferences or visit benchmark institutions abroad to update their knowledge, at their own
expense. The Pakistan chapter of IASP, organizes a pain conference every year and all pain
specialist attended that pain conference.
Another key informant emphasized that there is no multidisciplinary pain focused
association in Pakistan and all the pain conferences and meeting activities are under the umbrella
of Anesthesia (P3). Participants shared their desire to have an independent body or organization
for Pain Medicine in Pakistan. Currently, in Pakistan, a majority of the members of IASP
Pakistan chapter are Anesthesiologists.
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4) Student Evaluation
Key informants reported that there was no formal protocol for student performance
assessment at the pain clinics. Students and fellows were evaluated within their anesthesiology
department for their pain management knowledge or the students enrolled in the MSc program
were evaluated every 6 months by the university that managed the program.
5) Pain Education Rounds
Two key informants stated that educational rounds conducted in the pain clinics range
from 1-2 sessions every two months (P1, P2). Those were the general rounds for anesthesia but
not specifically for pain and even then there was no budget dedicated for the general rounds.
Sometimes they invited clinicians from outside the department for the general rounds. If the pain
specialists felt a need for discussion on any particular case or procedure, they discussed it
informally.
6) Need of Education and Awareness
A key informant stated that the lack of knowledge and training for healthcare workers,
general physicians and the population resulted in inadequate provision of pain treatment services
in Karachi. Many medical professionals treat CNCP patients on their own as they have, as yet,
not realized that pain management is a clinical speciality. It was only when the general
practitioner was faced with a complex patient that they look around for assistance from a
specialist and then figured out that such a specialty existed. One key informant emphasized the
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shortage of pain specialists in the city and the country and highlighted the need to organize
workshops and meetings to better coordinate access to this scarce resource (P4). A key informant
shared their experience about a continuing education program that they provided to GPs where
afterwards, the GP complained that neurosurgeons and rheumatologists wanted CNCP cases to
be referred to their respective specialties, and they were confused as to who should see the case
first. Key informants highlighted the need to educate the GPs about how the pain specialist can
assist them in coordinating referrals of these complex CNCP cases to these different specialties
(P2). One key informant was concerned over the pain management material only being available
in English. The Participant felt that English is not a locally used language therefore, pain
awareness and management material and brochures should be available in the local language
(Urdu) along with English. That participant would be willing to make those resources available
in the local language if resources could be found (P3). Another key informant described their
practice for conducting awareness programs within the city by conducting pain camps,
educational activities, and an advertising campaign for awareness of pain management (P1).
Summary of Educational Activities
• Lack of dedicated funding for educational activities
• Inadequate opportunities for education and training in CNCP within postgraduate
programs
• Insufficient opening in CNCP education for Continuing Health Education for practicing
professionals
• Need of accreditation for healthcare providers to deliver CNCP care.
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• Desire to educate the medical professionals and the public aware about pain and its
management.
RESEARCH Activities:
1) Funding Mechanism for Research
There is no dedicated budget available for research of CNCP management at any of the
pain clinics surveyed. Occasionally pharmaceutical company will provide funds or assist these
pain clinics to conduct a clinical study or clinical trial of one of their drugs.
2) Research Personnel
All key informants reported their involvement in research projects at the time of this
survey. However, they were involved at a supervisory level only. The residents and students
coordinated and administered these research projects. A key informant explained that their clinic
was under the umbrella of the Anesthesia department, which had three divisions: general
anesthesia, surgical anesthesia and pain. Clinical fellows in each division were expected to
conduct a relevant research project, some of which were focused on pain. Also, key informants
stated that the students involved in MSc Pain Medicine program had to publish one research
paper on pain management during their master’s program which was supervised by the key
informant (P1).
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3) Research Productivity
Two key informants indicated that their pain clinics focused on conducting clinical
research and trials for equipment and other CNCP treatment modalities either in a self-funded
manner or with industry support. Another key informant’s pain clinic was involved in
development of case reports. One key informant mentioned that currently their clinic is
collecting data concerning patient outcomes (P3). The numbers of publications published in the
last five years varied from one pain clinic to another. In total, the 4 key informants had published
4-5 papers in the last 5 years.
Summary of Research Activities
There is no dedicated funding for research
No organized system to conduct research.
There is no parameter for promoting research.
Mapping of Services Described by Key informant per their Location
Figure 5 illustrates the narrative/ description themes derived from key informants
interviews. Table 4 illustrates that least one key informant from the studied cities commented on
each corresponding theme.
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Table 4: Mapping of Services Described by Key informant per their Location
Domain Kuwait Karachi Toronto
1. INFRASTRUCTURE UTILIZATION 1. Organization and Purpose of Pain Care Clinic P1,P2,P3,P4 P1,P3,---,P4 ---,P2,P3,P4 2. Human Resources P1,P2,P3,P4 P1,P2,P3,P4 P1,P2,P3,P4 3. Pain clinics Space Allocations P1,P2,P3,P4 P1,P2,P3,--- P1,P2,P3,P4 4. Financial Support for Pain Clinics P1,P2,---,P4 P1,P2,P3,--- P1,P2,P3,P4 5. Collaboration and Affiliation within Hospitals P1,P2,---,P4 P1,P2,---,--- P1,P2,P3,P4 6. Access to Resources for Delivering CNCP services P1,P3,---,P4 P1,P2,P3,P4 ---,---P3,P4
2. DELIVERY OF CLINICAL SERVICES 7. Delivery of CNCP services in out-patient settings P1,P2,---,P4 ---,---,---,--- ---,P2,---P4 8. Workload and Wait Time P1,P2,P3,P4 P1,P2,P3,P4 P1,P2,P3,P4 9. Types of Patient Care Delivered P1,P2,P3,P4 P1,P2,P3,P4 P1,P2,P3,P4 10. Treatment Modalities Offered by Pain Program P1,P2,P3,P4 P1,P2,P3,P4 P1,P2,P3,P4 11. Clinical Activities of Pain clinics P1,---,---,P3 P1,P2,---,P4 P1,P2,P3,P4 12. Coordination of Care ---,P2,P3,P4 P1.P2,---,P4 ---,P2,P3,P4 13. Special Services for Impaired Population ---,---,---,--- ---,---,P3,--- --,---,---,--- 14. Referral Pathways P1,P2,P3,P4 P1,P2,P3,P4 P1,P2,P3,P4 15. Institutional Policies for CNCP Clinics ---,P2,---,P4 ---,---,---,P4 P1,P2,P3,P4 16. Adaptation and Use of Clinical Guidelines P1,P2,---,--- P1,P2,P3,P4 --,P2,---,P4 17. Planning for Discharge and Continuity of care P1,---,P3,P4 ---,---,P3,--- P1,P2,P3,P4
3. EDUCATIONAL ACTIVITIES 18. Funding Mechanism for Education ---,---,---,--- P1,P2,---,--- ---,---,P3,--- 19. Education Prospects P1,---,P3,--- P1,P2,P3,--- P1,P2,P3,P4 20. Teaching and Training Practices P1,---,P3,P4 P1,P2,P3,P4 P1,P2,P3,--- 21. Student Evaluation ---,---,---,--- P1,---,---,--- P1,P2,---,--- 22. Pain Education Rounds ---,---,---,--- P1,P2,---,--- ---,P2,P3,P4 23. Need of Education and Awareness P1,P2,P3,--- P1,P2,P3,P4 ---,---,---,---
4. RESEARCH ACTIVITIES 24. Funding Mechanism for Research P1,---,---,--- ---,P2,---,--- ---,---,P3,--- 25. Research Personnel P1,---,---,P4 P1,---,---,--- P1,P2,P3,--- 26. Research Productivity P1,---,P3,P4 P1,P2,--- ,P3 P1,P2,P3,---
Table 4 describes key informant from the city indicated by the column heading reported a
narrative/ description that could be assigned to the theme row.
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Figure 5: Themes of the Survey under the Domain of D-L Hybrid Framework Output
Figure 5 describes the total number of themes identified in the survey interview and can fall
under one domain of D-L hybrid framework
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Figure 6: Themes of the Survey Mapped On D-L Hybrid Framework
Figure 6 illustrates the mapping of survey themes/output on the D-L Hybrid framework domain
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7.3.4. Mapping of Survey Output on the D-L Hybrid Framework:
In this thesis, I have developed the D-L Hybrid evaluation framework for examining
CNCP services that can be applied to a system evaluation. As seen in Chapter 4, this D-L Hybrid
framework was organized according to three main hierarchical constructs: inputs, activities, and
outputs.
The D-L Hybrid Framework proposed connections between inputs, activities, and outputs
from left to right, up to down and the use of boxes and arrows makes the relationships
unidirectional, multidirectional or static in the framework; however, they can be dynamic and
interactive with each other (Fig. 3). At this stage, I set out to examine any relationships or
associations in the studied data of the thesis (Fig 6) as an exploratory rather than confirmatory
research process. The goal was to establish that the framework captured major domains of the
discussion with pain clinic directors concerning how they envisioned outputs of their clinics.
Within the scope of this thesis, the focus was on describing the feasibility of using a systematic
evaluation methodology in a way that was logical and measurable for the case of specialized
clinics capable of delivering CNCP management services. For example, in the output domain of
D-L Hybrid framework related to the delivery of clinical services, the theme of referral for
consultation or referral for intervention (e.g. physiotherapy or nerve block injections) can be
considered from the practice and institutional level. Some discussions related to referral may best
fit as an output while for others it may best be described as a process. Typically, outputs reflect
actions that are under control of those involved in the implementation of services (i.e. clinic
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staff). Another example was the use of specific guidelines that provide one way pain specialists
are delivering CNCP care. Regarding the infrastructure domain, funding, available equipment,
space allocation, access to continuing education regarding CNCP can be considered as indirect
measures of the extent to which hospitals value the pain specialist role in the delivery of CNCP
management services. While I did not specifically address the relationships between constructs,
these relationships arose organically from the pain specialist participant’s description of their
experiences. An important next step in the validation of this framework is to confirm these
posited relationships, their directionality (if any) and the strength of those relationships between
the framework constructs.
Another step in building and validating this framework would be to implement it. I
suggest that such an implementation would require adaptation according to the local, regional or
national level constraints such as those revealed through the case study review procedure. For
example, the framework assumes that a pain specialist is functioning under “normal care
conditions” that are not being disrupted by unexpected or unusual cultural, political, economic,
social or technological events or other unexpected contextual issues (e.g. earthquakes, wars or
other public health emergencies). Standard evaluation will need to await normalization of affairs.
These disruptions may limit the effectiveness of evaluation process of the D-L Hybrid
Framework.
Descriptions of pain clinic director perceptions emerging from application of the D-L
Hybrid evaluation framework can provide a rich representation of the muti-faceted interactions
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that can influence clinic outputs. This source of evaluation material may make it easier to explain
to others like planners, administrators and other health care providers in a position to help
modify structures and processes that impact on outputs what the problem is and what could be
possible consequences of changing the status quo. It can empower advocates of improved CNCP
services by providing a factual description of the specialized pain clinic and identifies areas
where outputs might be improved. Further detailed examples for each construct in the framework
and its utility are elaborated in the discussion section of this chapter where implications of the
described results are discussed in relation to opportunities for improving the four framework
constructs of output related CNCP services provided by specialized pain clinics.
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7.4. Discussion
The work described herein demonstrates the utility of a new approach to evaluating the
globalization of health systems. By interviewing specialists responsible for running specialized
clinics in different global cities, a descriptive landscape vis-a-vis their experience of barriers and
opportunities emerges, colored by the local context. The approach also provides a window into
how the specialist's own particular approaches, normalized by their international level of
training, and is impacted by local and global realities.
The focus was on pain specialists responsible for providing CNCP management services
through specialized pain clinics in three global cities: Kuwait, Karachi, and Toronto, where
global standards of care are available. Four specialist, each responsible for a different specialized
clinic, in each of the three clinics were surveyed for a total of twelve key informants. Through
the application of a semi- structured qualitative method, I was able to identify and elaborate
several distinct themes.
A new form of evaluation framework that was a hybrid of standard Donabedian and
Logic model frameworks was developed for this study. This D-L Hybrid evaluation framework
(which described in the earlier part of this thesis Chapter 5) was used to describe four domains of
output in the delivery of CNCP services: 1) Infrastructure 2) Clinical Services 3) Education
and 4) Research.
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An analysis of systematic review results of CNCP management globally and in the three
target cities led to a focus on those domains and anchored development of a questionnaire that
served to structure interviews about the relationship within and between those domains. The
landscape described by the survey results provides grounding for describing global developments
in CNCP management and enactment of quality improvement efforts through a global cities lens.
This study was designed to document the landscape with respect management of CNCP
patients in four specialized pain clinics in each of the three cities: Kuwait Toronto and Karachi.
In their survey narrative comments, the twelve pain specialists clearly emphasized the challenges
they share while delivering CNCP management services through their clinics. This reflects their
common level of training at internationally recognized healthcare centers. However, that
experience varied among the pain specialists both within and between these global cities,
reflecting differences in healthcare system and governance and how individual practitioners have
adapted to those differences.
Findings from the qualitative analysis of the evaluation survey questionnaire revealed a
breadth of important output barriers. The biggest obstacle revealed related to general lack of
resources for providing the level of CNCP management services that all of these specialists felt
capable of delivering. Across all domains, a broad range of important problems limiting access to
the beneficial clinical services that could be identified. These have global implications. Issues
highlighted in results related to the Infrastructure domain included scarcities of resources and
workforce, especially a scarcity of appropriately trained specialists to provide these effective
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services, and a lack of dedicated space allocated for the delivery of those services. The results
related to the Clinical Services domain were associated with the long hours required by our key
informants’ specialists who had to devote the provision of optimal pain care. There also were a
number of barriers recognized in their efforts to implement the current global standard of cares.
Those barriers included, lack of integration between levels of care, poor communication and
coordination between health-care workers, and unrealistic expectations by the CNCP patients.
Results related to the Education domain highlighted lack of education with respect to CNCP
management among general health-care providers, absence of structured format for specialized
CNCP management training, few opportunities of continuing education for practicing pain
specialist and general lack of awareness of their specialty and their capacity to deal what is often
an unrecognized opportunity for relief in the burden of living with chronic pain. Results related
to the Research domain reflected the inadequate levels of funding, resources and priorities for
research outputs by specialized clinicians running specialized clinics.
Taken together, the results of this study suggested that opportunities for relieving
avoidable distress globally are being missed. This was linked primarily to a scarcity of resources
directed to existing and well-structured pain clinics managed by highly qualified specialists
found in global cities. The qualifications of those specialist was independent of the economic
development of the countries in which those cities are located demonstrating the normative value
of taking a global cities lens to evaluating globalization of health care services for complex
chronic conditions. The results of this survey are concordant with major themes described by the
International Association for the study of Pain (IASP, 2011b) and highlighted missed
opportunities for effectively treating CNCP patients, in three global cities. However, this study
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deepens understanding of those opportunities, by providing additional insight into the logistical
details involved with pain management service procuring in global cities. Therefore, for any
organizational and mobilization efforts to be successful, it will be important to address barriers in
the delivery of CNCP management and services revealed by this survey. Recommendations to
address those barriers are grouped below according to the identified domains.
Suggestions for improving the Infrastructure Barriers
At an institutional level, various factors limit access to CNCP management services
especially scarcity of specialist and limited awareness of their potential as evidenced by lack of
resources dedicated to the supporting the specialty clinics that they run. For example, minimal
space is often allocated to the clinic by the hospital departments that host the clinic. As shown in
this study, nearly half of the pain specialists had access to only one room that was often shared
with other services and did not have designated consultation space for often vulnerable CNCP
patients. Many of these key informants did not have dedicated procedure rooms. This lack of
space strongly limits the possibility of expanding and improving the CNCP services despite
increasing demand as more patients become aware of their services.
Inadequate staffing, lack of drugs and equipment represent additional important factors
hindering the delivery of CNCP services. Chronic pain is commonly viewed as a complex ill-
defined health problem, and several other non-pain specialists were reluctant to be involved in
this treatment unless supported by the institutions. There is need to provide adequate funding for
space, medical staffing and specialized equipment. Implantable devices should be offered on
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subsidized cost and only to individuals who are really in need. Pain specialist with extensive
training in the full spectrum of pain management services always should be involved in assessing
that need. Managerial, secretarial, clerical and information technological support is important to
manage outpatient work. This enables the CNCP services to achieve required targets and
improved quality standards (Rowbotham, 2014).
Besides variability in services related to practice locations, there were also differences in
types of services provided. These services are often limited to simple, instrumental
pharmacological or interventional management designed for acute pain relief. Only a few of the
specialty clinics surveyed were able to implement the recommended multidisciplinary approach
in which they were trained. Although not every CNCP patient requires this multidisciplinary
approach, (Haldorsen, 2002) many complex cases that often provide the greatest burden on the
health care system can benefit substantially in a cost effective manner from coordinated care
from many specialists all of whom have been trained in patient centered pain management (Peng,
2008). This has been recognized for over a decade and all key informants were aware of this
opportunity but organizational barriers prevent its implementation.
Although multidisciplinary treatment requires having more than two health care providers
from different disciplines under the same roof, it may not always mean that the pain condition is
treated in an integrated manner. I would like to argue that the ideal treatment approach should be
‘interdisciplinary’. An interdisciplinary approach is characterized by a variety of disciplines
working together in the same facility in an integrated manner with joint treatment goals and
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coordinated interventions that are facilitated by ongoing communication among members of the
health care team (Clark, 2000; Gardea, 2000). Services, such as physical therapy, psychological
evaluation and mental health clinics, were generally to be found within the institutions hosting
the clinics surveyed. However, the extent of the access and logistics of that access for patients
with chronic pain were limited.
This reflected in part the common practice of treating those patients suffering from
complex chronic conditions as suffering from acute care problems and treating them as
outpatients. Nonetheless, strategies that use coordinated and ongoing access to available
resources (e.g., physical therapy, clinical pharmacists, psychology clinics) overseen by the pain
specialist to deliver clinical services based on a chronic disease model for pain-related care could
prove to be an effective and efficient method of relieving the overall societal burden of chronic
pain. There is experiential evidence that changing models of care are resulting in greater inter-
professional collaboration and involvement of professionals in care in ways that have
traditionally been the domain of a single profession (Murray, 2011b; Valgus, 2010).
Suggestions for improving Clinical Service Barriers
Pain specialists only devoted from 8-20 hours per week treating CNCP patients. This part
time approach coupled with the scarcity of specialty pain clinics and general lack of awareness
of the effectiveness of the services that the clinics can provide means that a there remains poor
access to services that are known to be effective in reducing the burden of this condition. Most
specialists with a clinical responsibility for the treatment of chronic pain are anesthetists in all
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global cities. While it is logical for acute pain services to be closely linked to peri-operative
services or anesthesia, this is less true for CNCP management. Although the anesthetist key
informants were all trained in, and aware of proven chronic pain management strategies, their
exclusive governance through an anesthesia department may be a detriment to necessary
interdisciplinary care for certain CNCP patients.
It is crucial for the pain specialist to have close links with other departments in the
hospital, for the effective delivery of CNCP services. Many of our key informants had developed
such links through informal channels. However, an institution wide chronic pain management
strategy analogous to cross-cutting patient safety of care quality initiatives might be warranted.
Since much of the burden of chronic pain is experienced outside of the hospital or the clinic,
some kind of ongoing community care program coordinated by the pain specialist as the patient
advocate in collaboration with the patient’s general practitioner might be considered.
Services offered to chronic pain patients in all three cities were fragmented and waiting
times were varied. Fragmentation of pain care is perpetuated by the consecutive, and even the
concurrent, evaluation and management of complex pain disorders by multiple physicians with
diverse training skills and competencies. Each specialist views and describes the patient and the
pain disorder from a unique specialty focus. Under the current system, multiple physicians may
contribute to a patient’s “pain management.”
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Based upon the results of this survey, the types of modalities offered to chronic pain
patients by the specialized pain clinics vary considerably from one hospital to the other within
the cities and among the global cities. Treatment may include early, effective use of pain-
relieving medications from the anti-inflammatory and opioid (narcotic) categories, with use of
additional pain-relieving medications or sedatives and local or regional anesthetic blocks as
appropriate. Despite the consensus of pain specialists, and the eminently ethical and medically
justified commentaries to consider opioid therapy in the collection of treatments for moderate to
severe pain (Brennan, 2007), there is concern at the shift from under-treating to over-treating.
In Kuwait and Karachi, there is reluctance by pain specialist to prescribe certain opioids
that are sometimes indicated for patients with chronic pain. Depending on the type of pain and
complexity, treatment of chronic pain should encompass the continuum of self-management and
access to full interdisciplinary pain management teams (Lynch, 2011b). The waiting delays for
the appointment to the specialized pain clinics in Toronto and Kuwait to take a toll on CNCP
patients as well the economy of a nation. A systematic review suggested that wait six months or
longer is, therefore, unacceptable for people with chronic pain (Lynch, 2007).
Referrals between the specialist and levels of care in all global cities have been identified
as an area deficient in coordination and clarity. A common complaint from specialists is that
referral letters fail to include enough information (statement of the problem, current medication
and reason for referral) to adequately address the problem.
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A common cause of communication breakdown is the inadequate transfer of information
from the primary care physician to the specialist and vice versa. Primary care physicians and
specialist perceptions of communication regarding referrals and consultations often differ
(Berendsen, 2009; O’Malley, 2011). Use of a standardized referral form can help to ease the
communication process by highlighting the information sought by the specialist. It is a complex
process that requires the involvement of primary, secondary, and tertiary care provider to come
up with agreements on referral and follow-up modalities. None of these specialized pain clinics
held regular meetings to discuss patient assessment or treatment plans. Ideally, members of pain
management team should communicate with each other and other similar local teams on a
regular basis, both about specific patients and overall improvement of pain clinic outputs.
Suggestions for improving Education Barriers
Continuing education in chronic pain diagnosis, treatment and follow-up was reported as
being generally inadequate and unsatisfying in all cities. Medical schools and allied health
professionals training programs devote less time to the topic of pain, despite, pain being an
important factor driving patients to seek healthcare services. Current accredited training for
physicians in pain is limited to a narrow sub-specialty focus (e.g. a sub-specialty in pain within
an anesthesiology fellowship program). That focus generally is insufficient in length for trainees
to understand the breadth of knowledge and skills necessary for practicing comprehensive pain
medicine. For improvement of pain management programs, pain specialists need to become
familiar with basic principles of pain assessment and treatment and how these can be
incorporated into patterns of practice including documentation systems, policies and procedures,
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standards of practice, orientation, and continuing education programs. These approaches train
pain specialists in advocacy for weaving pain assessment into the very “fabric” of the hospitals
and institutions (Nova Scotia Report, 2006).
The discipline of pain medicine has reached a point in its development at which the
interest in being identified as a specialist is so high that there is now competition for control over
pain medicine training, accreditation, and certification processes. As many organizations exist,
standardization among organizations is highly varied. The qualitative survey analysis of this
thesis show that majority of pain fellowships are administered through the Departments of
Anesthesiology, which is congruent with the existing evidence (Rathmell, 2002; Brotherton,
2004). While this background provides excellent training in interventional approaches to pain
management, training is minimal in clinical, diagnostic, and therapeutic neurosciences, which are
increasingly central to understanding pain (Dubious, 2009). As a result, the discipline of pain
medicine risks becoming increasingly unidimensional and does not meet the needs of the CNCP
patients.
Jurisdictions, such as France and Australia that have made pain management a priority,
and have implemented educational programs for their health professionals. In France, physicians
learn pain management strategies in medical school through a mandatory module on pain
management and palliative care (Dobkin, 2008). An inter-university diploma called “Training in
Pain Management for Health Professionals,” was created to harmonize pain education initiatives
for health care professionals. The University of Toronto Centre for the Study of Pain (UTCSP)
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tackled the education issue by having its Education Advisory Committee provide one integrated
course to all undergraduate students in the Health Science Faculties (Watt-Watson, 2004). These
programs point to an emerging consensus that professional education in pain management at the
grass root level is a basic component for effective and efficient delivery of pain management.
Although, there always will be a need for a pain specialist they need to be more proactive in
educating their generalist and specialists colleagues about how the specialty of chronic pain
management can benefit the lives of patients and the lives of other health professionals treating
the patient for conditions where chronic pain is a co-morbidity.
In the recent survey, pain specialists from Kuwait and Karachi shared their concern of
pain management at the primary care. Primary care providers are often unclear as to when to
refer patients with chronic pain. General practitioners also have insufficient resources to refer the
patient to the appropriate physicians or believe that they can treat chronic pain on their own
(Lakha, 2011). Continuing education programs are necessary to fill the knowledge gap, foster
mutual acquaintance, and develop common discourses among primary physicians and pain
specialist. Commitment from every level of health care and academia needs to support the pain
education, and training of all health professionals in all global cities.
Suggestions for improving Research Barriers
Research into CNCP conditions and responses to care was reported as being severely
underfunded in all global cities. Despite the opportunities that some key informants saw,
evidence showed trends in funding for research on pain has been on a decline (Bradshaw, 2008;
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Lynch, 2009, Sessle 2011). Research into fundamental mechanism underlying CNCP are ongoing
but there are relatively few clinical, practice or implementation research studies looking into
operational ways of improving CNCP management. Thus, despite impressive progress in
understanding pain from a physiologic perspective in recent decades, there is lack of high-quality
operational research to guide management of patients with CNCP and to translate that
understanding into higher quality and more effective care. There was a willingness on the part of
our key informants to engage in research but little encouragement.
Limitation of the Study:
Although small, the sample consisting of twelve pain specialist from Kuwait, Karachi and
Toronto, was able to generate a broadly diversified but representative picture for delivery of
CNCP management services globally. Considering the nature and objectives of the survey, I
believe that this sample allows for some generalizations to the situation globally at least for the
steadily increasing proportion of world living less than a day’s travel from the center of a global
city. This was despite using cross-sectional survey design data, limited further to explore
participant responses.
Despite the survey design, participants with either strong positive or negative opinions
took time to respond to the survey which could be completed in about 1 hours’ time. Each city
has its own culture and tradition, providing a necessary variety in evaluating how global
standards of CNCP management are being applied globally. However, because each participant
was trained in an internationally significant university hospital setting they had a normative level
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of training and skills. This meant that they shared a common language and worldview when it
came to their specialty and talking about the structures processes and outputs that are related to
that specialty. This qualitative research, which focused on unverified reported experiences of
pain specialists, needs to be supported by more direct ethnographic or quantitative observational
studies. In addition, the study only explored the perspective of pain specialists who were in
leadership position regarding the delivery of services for CNCP management. Future studies
should consider the perspectives of other pain consultants and allied health professionals
associated with the CNCP clinics to arrive at perhaps a more comprehensive view of the value of
the clinics outputs. That information will be crucial for helping policy makers and health
administrators to understand and formulate a better and more cost effective way to deliver health
services to CNCP patients.
7.5. Conclusion
The use of “structure-process-output” conceptual D-L Hybrid framework provides a
practical framework for a research agenda that can ultimately assess whether CNCP services at
the specialized pain clinics have adequate outputs and can deliver optimal level of care.
Regardless of whether CNCP is considered a symptom or a distinct clinical entity, the fact
remains that the lives of many CNCP patients are devastated by this problem. Despite significant
efforts to optimize and organize services and to devise generally applicable care protocols for
CNCP patients, many patients fail to receive a level of possible pain relief that should be possible
in these global cities given the access to process and structural resources located in those cities.
The result of a qualitative survey of pain specialist reported here highlights major but solvable
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problems facing CNCP management services globally. The impact of existing specialized CNCP
clinics could be increased with increased support for infrastructure training, education and
research anchored by those clinics. Continuing education, professional development of staff and
regular service evaluation, including audit of outputs and outcomes, will enhance effective, safe
and timely CNCP management services.
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Chapter 8 – General Discussion and Limitations of the Study
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8.1. General Discussion
In this final chapter, I discuss and integrate the significance of my results. Additionally, I
comment how those results met the study aim to develop survey tool for characterizing the
challenges of CNCP management in different locations globally. A global cities lens was taken to
enable the requisite variety of local contexts while ensuring that pain specialists shared similar
training and had access to necessities to practice at a global standard of care.
Numerous studies have shown that the clinical management of various CNCP conditions
remain unsatisfactory globally. Based on my review of the literature, certain challenges with
respect to the management of CNCP were identified. Individual case studies of CNCP
management in the three global cities studied provided a comparative landscape. These case
studies highlighted the availability of pain management services, as well as barriers that impeded
access to CNCP services in each of the global cities. Despite the success of public health reforms
and urban planning in improving the quality of life, these global cities are still confronted by a
significant CNCP burden.
The thesis results emerged from application of a qualitative and pragmatic
methodological approach to capture the experiences of pain specialists involved in the delivery
of CNCP services in specialized pain clinics located in the target cities. Key informants
identified deficits at the provider and system level that must be addressed in order to deliver
appropriate services to CNCP patients. Insight gathered from the key informants related to the
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need for on-going development and increased quality improvement efforts designed to increase
adherence to evidence-based practices for treatment of CNCP.
Themes identified descriptive aspects of working with CNCP patients that could
incentivize commitment to improvement efforts. Study participants identified multiple
experienced and perceived barriers to the provision of effective pain management. Barriers
related to structural factors included lack: of funding, general awareness of pain specialists’
scopes of practice, collaboration and communication with colleagues within institution. Barrier
related to process factors included: poor understanding by general practitioners on how to guide
patients suffering from CNCP to seek specialist advice; challenge in adapting globalized clinical
guidelines to local realities; lack of integration between levels of care; cultural factors;
unrealistic patient expectations that their pain can be cured. Reflecting on the description
provided by the key informants in all three cities, I have concluded that hospital management
could make better use of pain specialists in meeting the needs of CNCP patients that they serve. I
hope that my results stimulate dialogue concerning how that opportunity could be realized with
wider the medical community, as well as health agencies and institutions dealing with the needs
of CNCP patients.
The first task in this comparative inquiry was to define the relevant units of analysis. A
global cities lens ensures that comparable local data on the characteristics of CNCP patients, the
density of medical resources, the extent of health coverage, and health system characteristics can
be obtained. There often is less diversity of training and access to expertise across different
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global cities than across different regions of the countries in which global cities are found. An
urban focus recognizes that a majority of the world’s population now lives in urban settings. This
research sheds light on issues related to existing infrastructure, education, research activities,
delivery and barriers of clinical services for CNCP management in specialized clinics.
This thesis developed an evaluation framework that is a hybrid between Donabedian and
Logic model. It is referred to as the D-L Hybrid framework and links elements of healthcare
system structure and processes to clinic output variables. I used the D-L Hybrid framework for
organizing common themes recognized in the pains specialist discussion with the semi-structured
interview of their clinics operations with regards to CNCP patients. The results of this study
strongly indicate that the relationships within and between structure, process, and output factors
influencing clinic organization are well represented with D-L hybrid framework.
Structure and process characteristics are dynamically interrelated, such as institutional
support for improvements in practice or pain clinic operations, which in turn makes the
institution stronger. Structure also interacts dynamically with output characteristics, such as clear
structural protocols for setting goals for internal evaluation frameworks, periodical re-
evaluations of those goals, documentation of the results of the evaluations and feedback of the
results to the staff. Given the interdependence of structure, process to output, this could indicate
that even though structural aspects, such as resources and administration are important, work to
improve process aspects could further improve outputs. The D-L Hybrid framework provides a
means for thinking about those inter-relationships. If there is enough time to work with features
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(structure), there is more support from colleagues (process), and the way that improvements are
achieved are evaluated (output). Global cities attract health professionals with global training and
provide them with access to infrastructure that meets global standards. Inquiry into how they
perceive their practice varies across global cities and can shed light on how external factors and
local health system policies impact on the quality of their practice outputs. This work has
revealed improvable deficits in those outputs of surveyed pain clinics in each of the global cities
studied. We expect improvable deficits will be found everywhere and that results of applying the
D-L Hybrid evaluation framework more broadly will suggest how globalized standards of care
can be translated and adapted to have broader reach while retaining core features that allow them
to be effective in a culturally appropriate manner. Rogers and Fraser (2003) suggest criteria for
selecting an evaluation approach: plausibility; practicality and evidence that an approach works.
Using the D-L Hybrid framework as a pragmatic process, achieved both aspects of the above
suggested criteria of evaluation approach.
8.2. Limitation of the Study
There are limitations to the approach described in this thesis, to start with getting
approval for this new approach from ethical committees was problematic and lengthy as each of
the global city has their own institutional review board procedures and policies. This was despite
the fact that highly competent medical professionals were the subjects and they faced little
unnecessary risk in talking about efforts that they were obviously proud of. Nevertheless, within
two years we were able to get approval from the academic institution from all three global cities.
Recruitment of a local collaborator was an essential feature of achieving approval.
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Although the questionnaire developed to structure the interviews was generic, it was also
essential to develop a good understanding of the local context in order really hear what key
informants were saying. As a limited, but again necessary, approach to that challenge I prepared
for the visit to each setting by developing a narrative review case study of CNCP practices in that
setting through systematic examination of published literature on the local health system and its
impact of CNCP management.
The scope of the review was wide. Some papers dealt with the change in outcome of a
specific pain management strategy, while others dealt with charges for basic chronic pain
services more generally. The results of this review process were heterogeneous and hard to
summarize quantitatively in a traditional systematic review process. There may be value in
narrowing down the scope of such reviews in the future, although this must be balanced against
the paucity of papers on pain management subject. Perhaps a focus on a specific topic, like
patient referral notes, studied in a wider group of global cities would allow for a more systematic
approach to this review process.
Evaluation of clinical services is neither precise nor conducive to completeness. Whilst a
larger sample may have revealed more themes, the D-L Hybrid evaluation framework proved to
be an effective and efficient audit methodology to investigate the CNCP services. My findings
adequately validated the framework and provided important baseline information for ongoing
assessment of pain specialist service in the global cities. Since, this is a cross-sectional study it is
important to be careful when discussing causal relationships regarding quality measures at
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structure process and output levels. But by focusing on outputs rather than more distant
outcomes, a more direct link may be established between structures and processes exploited by
the pain clinic leadership to achieve desired output goals. The methodology is appropriate for
both external and internal quality assessment.
Other study limitations were related to time, and convincing pain practitioner to spare
sufficient time from their busy practices to participate. As the study was a part of doctoral
program it had to be completed within a given time frame. Securing consent and time from the
participants was tedious and challenging as the respondents had reservations with regard to
answering some questions initially. They worried that providing answers to questions about
barriers faced by their clinics might be perceived as a criticism of the system in which they
practiced a might negatively impact their jobs and positions. It was important to gain their trust
and convince them that their anonymity could be protected. This was additionally challenging
since there was no precedent for this type of study. However, these factors were mitigated by
providing detailed explanations about the study purpose, maintaining an environment conducive
for the interview.
My experience with working in a Toronto pain clinic and in the pain field allowed me to
gain their trust. It will be important to determine in the future if a capacity to develop a common
ground between researcher and subject is a necessary element for the success of this method.
Because only four key informants from each global city contacted for the study participated, we
cannot rule out the possibility of self-selection bias. I did all the coding of themes derived from
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content analysis of the results but these were validated by my supervisor. I did not formally
calculate an index of inter-coder agreement when analyzing our qualitative results.
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Chapter 9 –Conclusion: Contribution, Implications and Future Direction
224
9.1. Conclusion
A major contribution of this thesis was to develop a pragmatic method for evaluating the
state of delivery of pain management services globally through specialized pain clinics run by a
pain specialist. It showed how structure process and output domains could usefully organize
themes revealed from structured interviews with pain clinic directors regarding their experiences
in running their clinics. The next obvious step is to begin exploring the dynamic interactions
between those domains, however, this thesis was concerned mainly with demonstrating the
feasibility of acquiring useful information from a single interview. It sets the stage for refining
the questionnaire and interview methodology for probing specific relationships in a qualitative,
quantitative or mixed manner. I have shown how the method can be applied to the evaluation of
CNCP services delivered through specialized pain clinics, but it is apparent that approach is more
broadly applicable to a variety of health challenges currently being dealt with through
specialized clinics attempting to deliver comprehensive care for similarly complex conditions. It
is important to understand the mechanisms and context that link structure and processes to
potential outputs for CNCP patients so that targeted, evidence-based solutions can be
implemented and adapted effectively. Further evaluation of the relationship between the
proposed framework components will be vital to assessing how the care provided to CNCP
patients globally can be improved.
My goal was to gather output baseline data that could be useful immediately for pain
specialists, administrators and educators in appreciating opportunities that could accrue from
better pain management in their jurisdictions. Combining detailed case studies with real life
insights from pain clinic directors is a first step in building the will to improve how pain care is
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delivered through specialized clinics globally. Reflecting upon the descriptions made by key
informants in three representative jurisdictions, one main conclusion was that pain specialists see
themselves as playing an important but under-appreciated role. Although the results reported in
this study should not be interpreted as definitive, they point to opportunities for improvement in:
the operational delivery of CNCP services, the continuing education of general health care
providers and greater involvement of institution and government in evaluating the impact of pain
management services within health systems.
The D-L Hybrid evaluation framework and the global cities lens enabled development of
a survey method that can provide a new approach for evaluating the global dissemination of
emerging trends in healthcare specialization. This framework allows for a standardized and
pragmatic comparison between equivalent clinics located in different global cities. Their location
in global cities ensures that the clinics are operating against a background of similar levels of
economic development and access to practitioners with similar training. Despite those
similarities local contexts can result in the implementation of internationally promoted standards
of care in different ways. The narrative descriptions of the experiences of directors of these
specialized pain management clinics organized in a systematic way through mapping responses
onto the framework provides a pragmatic evaluation of the similarities of barriers encountered
and of opportunities for adapting lessons learned in one location to another. This study points to
the possibility of developing a toolkit for evaluating the deployment of any emerging specialized
care on a global scale, and to understand how general practices could be adapted to local
realities. Many barriers identified as hindering clinic outputs were shown to be independent of
the location while others were specific to the location of the clinic, and still, others were specific
226
to the personality and worldview of the clinic directors. Many of the barriers to more satisfactory
outputs of the clinics identified in this thesis can be overcome in ways described in the thesis
discussion and in the case studies in the thesis appendices. However, a first step is understanding
how the landscape in which the clinic is located impacts those barriers. This thesis demonstrates
the feasibility of pragmatically characterizing those barriers on a global scale and distinguishing
global from local from personality perspectives that can affect possible solutions.
9.2. Strength of the study
This study was conducted with key informants who are pain specialist and currently
running specialized pain clinics in Kuwait, Karachi and Toronto. Each clinic provided care for
CNCP patients at the time of data collection. Interviewing these key informants helped in
understanding relevant macro and micro level issues faced by their clinics. In addition, the
process of talking about a clinic that they founded and ran, often with little support from above,
led them to volunteer a rich set of commentary about the subject under study.
The use of a pragmatic combination of descriptive qualitative and quantitative
approaches to collect data is one of this study’s main strengths. Such an approaches integrate the
results revealed by the quantitative and qualitative methods used and aims to develop a more
holistic/humanistic understanding of dynamics of health services (Speziale, 2011). The
employment of a descriptive qualitative and quantitative method helped to explore varied aspects
of the clinical challenges faced by pain specialists within a single interview lasting 1-2 hours.
This qualitative and quantitative approach generates a richer set of data than otherwise would be
possible using either methodology exclusively (Daymon, 2010). In particular, results of the
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descriptive quantitative part of this study revealed a quick overview of perspective barriers in the
delivery of CNCP management in specialized pain clinics globally that was contextualized by the
qualitative results. These results highlighted areas of deficiency where applicable corrective
actions could be implemented or at least studied in greater detail.
Discussions with pain specialist anchored by inquiries about the operational outputs of
their pain clinics helped them express concerns and feelings related to the general challenge of
CNCP burdens globally and in their local context. The fact that they were all practicing in a
global city and had received similar training helped in discrimination between local, global and
personality factors impacting on that challenge. Barriers faced in relation to the delivery of
effective CNCP services and management was apparent in all the interviews with the pain
specialist. Opinions about barriers indicated the significance of this topic for the key informants.
Differences in practice situations resulting from difference in the practitioner outlook and the
locations where they practiced provided a wide range of contexts within which to triangulate data
concerning local and global concerns. Similarities and differences between experiences and
barriers perceived by the pain specialists were consistent across settings and methodologies.
Another strength of the study was our success in recruiting twelve pain specialists from
three global cities who worked in a specialized pain clinic in leadership positions. Our ability to
apply the methodology in three global cities enhanced the representative nature of the study
sample. Additionally, examining current CNCP practices, from the perspective of different
nationalities and cultural backgrounds, allowed insight to be developed concerning problems
faced with dealing with the multicultural mix of patients seen in Toronto pain clinics and many
228
other multi-cultural global cities. To conclude, this study has supplemented literature in regards
to CNCP management serving in multicultural health care settings. The qualitative and
quantitative method to collect data for this study enhanced the strength of the results and the
credibility of the analyzed data. The results can serve as baseline data to be used by pain clinic
administrators, educators and researchers to build upon, as presented in the next sections.
9.3. Implications of the Study
The results provided by this preliminary proof of principle study provides a baseline of a
new type of data for guiding pain specialists, and other stakeholders in adapting to global trends
in practice outputs. That, in turn, could lead to continuous improvements to patient care,
regarding pain assessment and management. In addition, it will increase awareness of the
barriers that unnecessarily hinder the efficacy of pain management provided to CNCP patients.
One implication of this study is in identifying a research scenario for gathering more descriptive
and interventional data useful in guiding future practice, administration and education related to
CNCP management.
9.3.1. Clinical Implication
The participants in this study provided insight into infrastructure and process level
deficits that must be addressed if appropriate access to care for CNCP patients is to be instituted.
Although only twelve pain specialists in three global cities were surveyed, the results were
remarkably consistent and were generated in a timely and cost-effective manner. They point to a
new way of allowing healthcare movements engaged in globalized but specialized changes in
practice to engage in reflective self-evaluation.
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The vanguards of these movements will gravitate to global cities and open specialized
clinics. They may be returning home after training at internationally significant clinical training
centers abroad or moving on as immigrants to new settings where they perceive that their
training will provide an opportunity for advancement. In all cases, however, the early successes
that led to the development of the movement will be met with barriers arising from local contexts
differences and the inertia of the way thing were done in the past that will create the need for
adaptation of the success practices that led to the evidence-based movement in the first place.
Nevertheless, their location in global cities will mean that access to the basic
infrastructure they need to practice as they were trained will be available. By understanding the
results from even small D-L Hybrid framework evaluation studies, global leaders of those
movements, as well as local activists can adapt to unexpected realities and maintain the
momentum and growth of the movement. In the case of the global movement to deal with the
global deficit of access to relief from preventable suffering caused by chronic pain, my results
point to a number of necessary moves.
This study employed a combination of descriptive qualitative and quantitative
methodologies. The combination of these approaches allows examiners of the results to get a
realistic and holistic view from which to derive insights into the barriers that may hinder the
delivery of effective pain management globally and in local settings that matter to them. This
perspective can guide decisions on taking suitable corrective actions to eliminate deal with
analogous barriers that they now recognize in the settings that matter to them. Additionally, pain
230
specialist facing similar barriers can use their colleagues’ experiences as evidence during
meetings with funding decision makers to discussions about managing future changes that aim at
improving the quality of CNCP management services in global cities everywhere.
Sharing the results with hospital administration will help them re-evaluate policies and
regulations about the specialized pain clinics and delivery of services for CNCP management
services. Given the need documented in my literature review, there is a need to find ways of
identifying and overcoming the deficit of pain specialists and specialized pain clinics globally.
9.3.2. Implications of Model
A systematic and evidence-based approach to services improvement may increase the
chance of effective and efficient use of resources invested in those services (Ovretveit, 2002,
Luxford, 2011). For instance, resources and administration (structure) could be improved by
implementing guidelines for CNCP service improvement and expansion advanced by increasing
the number of allied pain professionals and the availability of dedicated space for pain clinics.
Studies show that clinical guidelines, based on evidence rather than opinion, have the potential to
promote interventions of proven benefit while discouraging ineffective practices (Grimshaw,
1993; Grol, 2003). Guidelines for services improvement might have similar effects. Pain
specialist engaging in professional development programs associated with CNCP management
could increase capacity for cooperation and collaboration, for all stakeholders. Lastly, evaluation
of goal achievement and development of competence measures could benefit from rapid
feedback on which measures are effective or not effective.
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The results described in my thesis can suggest ways of applying more quantitative
methodologies using a sample cohort of a larger set of clinics distributed over a wider set of
global cities. For instance, the results suggest that there is a need to explore the current quality of
referral notes and how the referral process might be improved especially for chronic pain.
Currently, each case of episodic disability, at the heart of all complex chronic condition, is
treated like an acute care incident. The evaluation process itself can be used as a forum for
dialogue and learning. Ideas and generalizations produced through D-L Hybrid framework
evaluations of one class of specialty clinics with a global presence can provide insights into
factors affecting the spread of other analogous specialty clinics globally.
9.4. Future Direction
This study of the organizational aspects of CNCP management in three representative
global city settings revealed some important future directions for research. They form a baseline
for future studies of a wider variety in global cities and of a more diverse set of specialized pain
clinics that are distributed in different regions. It also will be instructive if future quantitative and
qualitative studies were conducted to explore the perspective of patients, other healthcare
providers and administrators concerning the outputs of these specialized pain clinics.
Furthermore, it will be helpful in the future to apply research methodologies aimed at further
validating the current research instrument (the D-L Hybrid evaluation framework) and to identify
how cultural or positional differences that may influence themes identified pain specialists’
responses. Evaluating the achievement of specific services output goals and descriptions of
constraints impacting on those goals could provide other specialists with insight into their own
options for dealing with analogous situations.
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Since cities are widely recognized as engines of economic growth, opportunity and
innovation, it will be important to communicate these results to a city planning audience. As
outlined in the case studies, a link between can be made between economic development and
promotion of CNCP services. Although this was not a primary focus of this thesis it is an area
that I hope to explore in my postgraduate studies. There is an opportunity through generalization
of the methodology to develop a global database and research program around CNCP services in
global cities that promote a systematic examination of comparative experience around CNCP
management service delivery in global cities. These could also assist to identify best practices
and, document informative failures and successes.
The field of pain management continues to grow around the globe, there is an ever-
increasing need for effective metrics to measure the quality of this care. This dissertation was
concerned with the evaluation of pain management services and highlighted a number of metrics
that could be used. However, these do not adequately assess all aspects of pain care in all global
cities. For example, in the study results under the theme of “Type of treatment modalities,” the
issues of prescribing opioids in Toronto is very different from the experience in Karachi and
Kuwait. In the latter two cities, results emphasized issues related to under-prescribing and strict
regulations while Toronto participants discussed the problem of over-prescribing.
I, propose that there is a need for quality assessment programs aimed at supporting
specialists engaged in innovative practices. Such programs would be in keeping with continuous
quality-improvement programs currently being institutionalized in major health centers globally.
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It could be focused on telling the specialist story and helping them to create a compelling
narrative how the structures and processes that they live with can be modified to allow them to
generate outputs they know will have long-term benefits. Their micro activities then could be
better integrated with health system planning at macro levels. These strategies may possibly
include; (a) Updating education on areas of pain management which are observed to be lacking,
(b) incorporation of a protocol for the administration of opioid analgesics which would guide
general physicians and health teams in making safe and effective decisions based on pain
specialist recommendations, (c) facilitation of best practices by updating policies, procedures,
and guidelines relating to pain management, and (d) undertake regular assessments of clinics that
offer pain management services through quality assessment program that implements an analysis
of clinic outputs using the methodology described here.
234
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235
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Appendix 1
Health Services for Management of Chronic Non Cancer Pain in Kuwait: A Case Study
Review.
This chapter has been published in the following journal Medical Principal Practice. 2016; 25
Suppl 1:29-42. Epub 2015 Nov 19.
278
Abstract
The experience of chronic pain is universal, yet pain management services delivered by health
professionals vary substantially depending on context and patient. This review is a part of a
series that examines the issue of chronic non-cancer pain services and management in different
global cities. The review was structured as a case study of availability of management services
for people living with chronic non-cancer pain within the context of the Kuwait health systems.
The case was built from evidence in the published literature identified through a comprehensive
review process. Evolution of the organizational structure of public and private health systems in
Kuwait described. These are discussed in terms of how they impact on delivery of
comprehensive chronic pain management service by health professionals resident in Kuwait. The
review then uses a description of chronic pain patient personas to highlight expected barriers as
well as compliance issues with services likely to be encountered in Kuwait. The case study
analysis and persona description illustrate a need to move beyond pain symptom management
towards considering the entire person and his/her individuated experience of pain such that
healthcare success is judged by enhancement of patient well-being rather than access to services.
A road map for improving integrative chronic pain management in Kuwait is discussed. (250
words)
279
Introduction:
Non-communicable diseases now account for 59% of the world’s 57 million annual
deaths, and 46% of the global burden of disease (WHO, 2011a; Lozano, 2010). The Eastern
Mediterranean Region Office (EMRO) of the World Health Organization (WHO) (where Kuwait
is represented), indicates that chronic diseases account for about 47% of the total burden of
disease in that region (Tunstall-Pedoe, 2006). Unlike communicable diseases where success can
be measured in terms of cases prevented and lives saved, with chronic disease success needs to
be measured in terms of promoting an experience of well-being and reducing experienced
burdens of disease at the individual and population level (WHO, 2011a).
The health system challenge of dealing with chronic pain is representative of the larger
challenge of dealing with chronic disease in general. A person’s burden of chronic diseases is
related to how it impairs everyday physical and mental functions and reduces his/her ability to
perform activities of daily living and contribute to society and the economy. This is particularly
true for people living with chronic pain (WHO, 2011a). Also the condition of chronic pain is an
important contributor to the burden associated with living with many other chronic diseases
(WHO, 2011a).
Chronic non cancer pain is usually defined as pain persisting over 3 - 6 months. Since
chronic pain arises primarily from non-cancer causes, in this paper the terms chronic pain and
chronic non cancer pain (CNCP) are used interchangeably. In this narrative review we focus on
management of CNCP and on how that management process needs to become more
comprehensive as recommended by many international organizations.
280
Comprehensive cancer pain management is already a recognized pillar of oncology
where optimal pain management is required to help the patients survive their cancer despite
highly invasive care (Sapir, 2010) The CNCP on the other hand spans a wide range of conditions
ranging from mild annoyance to complete incapacitation. Nevertheless, the person’s experience
of well-being while living with pain can be increased through coordinated interventions by
medical professionals and the healthcare system (Fact sheet: IASP, 2013). In keeping with the
wider evolution of the concept of health from an absence of disease and disease symptoms to an
experience of well-being (Tunstall-Pedoe H, 2006), this review takes a well-being perspective.
Because pain is a multivalent, dynamic, and ambiguous phenomenon, it is notoriously
difficult to quantify, and therefore caution is warranted in issuing broad statements regarding the
global epidemiology of chronic pain. Nevertheless, it is estimated that at least 10% of the world's
population, approximately 60 million people, endure chronic pain, regardless of age, sex,
income, race/ethnicity, or geography (Fact sheet: IASP, 2013). Although the prevalence of
chronic pain complaints are universal, people living in economically disadvantaged countries or
who are themselves economically disadvantaged exhibit higher health burdens associated with
unrelieved persistent pain and less access to treatments proven to be effective (Goldberg, 2011).
This chronic pain burden is associated with economic costs that are both direct and
indirect (European Federation of IASP Chapters, 2012). Recently, Gaskin and Richard (2012)
attempted to estimate the annual economic costs of chronic pain in the U.S. in terms of direct and
indirect costs. They estimated a range from $ (560 to 635) billion dollars (about 170-192 Billion
KD), equally divided between direct and indirect cost. There are no published studies that
281
attempt to estimate the economic burden of pain in the Arab world. However, statistics for the
prevalence of pain in Kuwait are similar to its global distribution (Hadi, 2006). Assuming a
similar estimate to the economic burden of the Kuwait gross domestic product (GDP), a cost of
billions of Kuwaiti Dinars can be projected.
Pain management is complicated by how it impacts patients' health status, treatment
decisions, service use, resource allocation, and costs of health care provided for other clinical
reasons. If pain is not specifically treated, it will augment the burden of other co-morbidities
associated with other chronic non-communicable diseases (European Federation of IASP
Chapters, 2012). In addition, if left untreated, pain can itself sometimes develop into its own
chronic disease (Ronsley, 2013; Witkin, 2013). For all of these clinical reasons, internationally
and within Kuwait, there is a growing interest in redesigning health care organizations and
practices to improve the quality of care for chronic pain patients. There is a recognized need to
close the gap in pain management between what is known to improve outcomes, and what is
practiced (Pain Free Kuwait MOH, 2010; Erdek, 2004).
There are also moral and ethical issues driving advocacy for greater access to effective
pain management service. The constitution of WHO, defines health as a state of complete
physical, mental and social well-being and not merely the absence of disease or infirmity (WHO,
1946). The International Society for the Study of Pain is collaborating with the WHO, both to
highlight the challenge of adequately providing healthcare for pain related problems and to
encourage implementation within the health system of pain management services known to be
effective in improving health and well-being (Bond, 2004). Under international human rights
282
law, governments must take steps to ensure that people under their jurisdiction have adequate
access to treatment for their pain (Lohman, 2010). Over the years, several agencies have
addressed inequality in both health and health care across the full spectrum of chronic diseases
(including pain) (European Federation of IASP Chapters, 2012; Campbell, 2012; Halpin, 2010).
Indeed, in 2010, the Kuwait government announced a program to make Kuwait free from pain
(Pain Free Kuwait MOH, 2010). As yet there are no published reports available on the success of
that program. Globally, the gap between progressively sophisticated knowledge of pain and its
treatment and the effective application of that knowledge is large (Patel, 2010; Schott, 2007).
Both acute and chronic pains are often poorly managed for a wide variety of cultural, attitudinal,
educational, political, and logistical reasons (Brennan, 2004; Loeser, 1999).
In order to understand the landscape of pain management and services available in
Kuwait in a way that is comparable amongst global cities, there is a need to review the existing
Kuwaiti health care system, organizational structure of public and private system, availability of
pain management services and barriers that often impede access to and compliance with care
plans provided or recommended. This article is the combination of case study and narrative
review, with the additional illustration of personas to clarify the system to the external audience.
A comprehensive search process was conducted that includes PubMed, Scholars Portal,
Sociological Abstracts and Google Scholar. Previous materials published in peer-reviewed
journals and grey literature were reviewed, in a systematic manner. References cited in relevant
articles were also reviewed. In addition, in order to further explore likely impact of available
pain management services in Kuwait, the present review used the lens of chronic pain patient
personas living in Kuwait. Personas are defined as fictional, but specific and concrete
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representations of potential target users of a product or service undergoing re-design. Personas
put a face on the user; a memorable, engaging, and actionable image that serves as a design
target (Pruitt J, 2010). Personas are used to illustrate how the health system can accommodate
different kinds of patients living with pain and to illustrate expected barriers that such patients
are likely to encounter. In summary, the overall aim of this case study was to provide a
description of how Kuwait health system deals with the challenges of chronic non cancer pain
management.
Kuwait Health System Background
Demographics and Geography
The State of Kuwait is a sovereign Arab state situated in the north-east of the Arabian
Peninsula in Western Asia. Kuwait is administratively divided into 6 governorates: the Capital
(Kuwait), Hawali, Farwaniya, Jahra, Ahmadi, and Mobarak Al-Kabir. Kuwait's economy
depends largely on oil and its per capita income is $23,500 (7,105 KD), one of the highest in the
world (Al-Ansari, 2010). As of 2012, Kuwait's population was estimated to be 3.8 million people
(PACI: Kuwait, 2013), and Kuwaiti nationals comprised 32% of the population, with 49% males
and 51% females (PACI: Kuwait, 2013). Among non-nationals, there is a high predominance of
males (65%), those males are mainly (54%) Asians and (42%) Arabs (PACI: Kuwait, 2012). The
largest groups of these expatriates occupy lower occupational positions with a predominance of
heavy labour jobs. There is no data about their interaction with the health system. Regardless of
occupational level, most expatriates work in the private sector and are paid less for the same type
of work than nationals.
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General Characteristics of Health Management Service in Kuwait
Kuwait's first efforts to initiate a modern health care system date back to the first years of
the twentieth century (Metz, 1993). By 1911 a hospital for men was developed followed by a
small one for women in 1919 (Metz, 1993). After the government began receiving oil revenues,
it expanded the health care system, beginning with the opening of the Amiri Hospital in 1949
(Metz, 1993). General mortality remained between twenty and twenty-five per 1,000 population
and infant mortality between 100 and 125 per 1,000 live births (Metz, 1993). After independence
in 1961, the government initiated a comprehensive health care system offering free services to
the entire population. Expenditures on health ranked third in the national budget. Most of the
physicians were foreigners, particularly Egyptians. Nonetheless, by the 1990’s improvements in
national health metrics were dramatic. Life expectancy increased by ten years as compared to
just before independence, putting Kuwait at a level comparable to most industrialized countries
(Health System Profile: EMRO, 2006; pg1-63).
This situation changed with the first Gulf War in 1990. The Ministry of Health (MOH), is
responsible for health policy planning, regulation, monitoring and evaluation as well as health
care service delivery. One of the Government's primary tasks after liberation was to bring health
care system back on track in the shortest possible time (Health System Profile: EMRO, 2006; pg.
18). In recent years, the MOH has invested in acquiring the modern and expensive medical
equipment available, favoring instrumental treatment over prevention (Mortimer, 2004),
Nevertheless, very significant improvements in population health have been achieved in the last
20 years, with Kuwait ranking in the top 50 nations globally and in the top 10% of EMRO
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nations in terms of access to health services (World Health Statistics: WHO, 2012). However, for
pain management, it requires further investment in education and ongoing training.
Current Organizational Structure of Health Services:
Comprehensive health services are available in Kuwait from both public and private
health care providers. There are six independent health areas (governates) in Kuwait namely: Al-
Sabah, Capital, Farwaniya, Hawally, Ahmadi, and Jahra. Each area is supervised centrally by
MOH and managed locally by a director. The health services are provided through six public and
12 private hospitals. Home visits are not available under the public health system in general,
except for geriatric home visits that are offered through the primary health care centers in each
health area. According to the World Bank, the total health expenditure as percentage of GDP in
2013 was 2.89% (Credit Suisse, 2013). This is far less than corresponding rates in developed
countries such as USA (18%) and Canada (11%) in the same year (Credit Suisse, 2013).
All the health services in Kuwait are provided free of charge for nationals. Non-nationals
have to pay for health insurance and are expected to make a small co-payment to access Primary
Health Centers (PHCs) where they can be referred to a specialist for free. Regarding
medications, some medicines are restricted for nationals, while non-nationals have to buy them
from private pharmacies. The free medications are available in pharmacies affiliated to the public
hospitals and are provided with a physician prescription. Also, laboratory and radiological
investigations are free for nationals while they only be accessed on; a fee-for-service basis for
non-nationals. Since 2011, expatriates who are working in the MOH, and their families, are
treated as nationals in terms of access to health services and in coverage of procedure costs
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(World Health Statistics: WHO, 2012). Additionally, some private workplaces offer facilitated
access to health care services for their employees through the private health care sector.
However, the level of this subsidy is unregulated and varies from one employer to another. The
Kuwait National Health System and central role of MOH are described in figure 7.
The nationality is an essential information for any person seeking healthcare service
thereby leading to discrimination in accessing some healthcare areas (Shah, 1996). The Ministry
of Defense and Kuwait Oil Company have separate hospitals for their employees. The Ministry
of Social Affairs runs a senior home that provides health services to handicapped and elderly
nationals (Kronfol, 2013).
Kuwait continues to rely on non-Kuwaiti health professionals to maintain its expanding
health system. As of 2011 the proportion of Kuwaiti physicians, nurses and dentists working in
the governmental health sector reached 40%, 8% and 65% respectively (Health Kuwait, 2011).
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Figure 7: Kuwait National Health System
This figure describes the Kuwait National Health System and central role of MOH
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Kuwait National Health Services System
General management of chronic pain occurs as part of primary health care in most
modern health care systems. In order to understand the barriers and opportunities for general
pain management, it is important to describe the public and private system of the state.
Public Health System Services.
All Kuwaitis and non-Kuwaitis have access to primary health care (PHC) services. There
are more than one hundred PHC throughout the state across the 6 health regions that provide
polyclinic services. These clinics deal with preliminary examinations and routine matters and,
where necessary, patients are referred to hospital specialists. In 2003, the distribution of
regulated health care professionals in Kuwait per capita was: 19/10,000 for medical doctors,
3/10,000 for dentists, 3/10,000 for pharmacists, 40/10,000 for nurses, 21/10,000 for hospital beds
and 3/10,000 for PHC units (PACI: Kuwait, 2013). Recent health care providers’ statistics, for
2011, indicate that the number of physicians has increased to 23/10,000. Hospital beds are
reported to be at the 22/10,000 level. In 2011, PHCs covered around 17.6 million visits, two
thirds of these visits were for Kuwaiti. National dental visits mediated through PHCs represented
55% compared to 45% of non-national dental visits (Kronfol, 2013).
Secondary care is provided through the six regional hospitals. In addition to these, there
are nine specialist hospitals including maternity, infectious diseases, mental health and cancer
hospitals bringing the total beds available to 6703, with total bed occupancy around 60%. These
hospitals utilized the largest proportion of the public health budget, despite restrained bed
occupancy and high pressure on primary care services (Kronfol, 2013). The same pattern of PHC
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visits is followed in hospital visits where national hospital visits outnumbered the non-nationals
visits (55% vs. 45%) (Health Kuwait, 2011).
Private Medical Care Services:
Despite access to comprehensive services available through the MOH; private hospitals
and infirmaries have flourished in the State of Kuwait. By 2011, the private sector provided
health care services through 12 private hospitals and three hospitals belonging to the oil
companies. The activities of these for profit organizations remain regulated by the MOH. The
latter determines the general framework under which these private services are delivered, as well
as the fees that the hospitals and clinics can charge for services provided. Private hospitals and
clinics often have an affiliated private pharmacy and clinical laboratory attached to them. The
private hospitals and clinics generally can handle most common acute, ambulatory care cases
with some having specialized departments. Some of them have a limited number of special
facilities such as Intensive Care Units and surgical suites. But usually, they refer cases requiring
specialized treatment to governmental run facilities. The exception is dentistry; Kuwait has
several private dentists and dentistry hospitals which deliver international-standard services
(PACI: Kuwait, 2010).
Despite overseeing a substantial improvement in health since independence, government
health policy remains focused on expanding hospital services in both the public and private
sectors. This approach is costly in the long-term and diverts resources that could be targeted at
promoting health and well-being of the whole population and the whole person. Balancing those
two complementary approaches (hospital care versus community care) will require shifting
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resources from cure-focused treatments to public health programs aimed at promotion of
comprehensive wellness programs and reducing the experienced burden of medical complaints
(WHO 2011a; Shukri, 2009).
Health Insurance Schemes.
The current policy of health insurance came into effect in 1999. It is focused on making
medically indicated procedures available and on expanding hospital based resources needed to
deliver services covered by this health insurance. An important element of this plan was the
ministry's aim to lease out some of those newly constructed hospitals on a contractual basis to
provide expatriates with access to medical care. Citizens do not have to pay insurance premiums
(Health System Profile: EMRO, 2006; pg1-63). From 2000, health insurance was made
obligatory for expatriates. The residency permit renewal period is also linked to the period of
health insurance coverage. Despite the private insurance, expatriates and their family members
are still expected to make a co-payment for all services utilized (Health System Profile: EMRO,
2006; pg1-63). Employers, either in the public or the private sector, pay the insurance premium
of the employee only, while the later has to pay the insurance premium for their spouse and
children for renewal of their residency. Local group insurance often requires a minimum of 15
persons, with an annual premium of about KWD 75 per person to cover medical expenses
including pain management for both in patient and out-patient treatments of up to KWD 5,000
per year (Health System Profile: EMRO, 2006; pg1-63; Call for Action: EMRO: WHO, 2010).
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Transient Guest Workers and Health Services.
The impact of chronic health conditions and associated disabilities, including the
presence of pain-specific conditions, on labor force outputs and employee absenteeism and
presentism are well-established (Langley, 2010; Bansback, 2012; Zhang, 2009). Occupational
accidents and diseases are major causes of injury and deaths among guest workers in Kuwait.
Reporting of occupational risks and diseases remains incomplete and negligible in the country
and certain sectors are not covered at all. Available data provided on occupational accidents
lacks precision (Occupational Safety and Health, 2007).
Workers in Kuwait are covered by three branches of employment law; 1) Kuwait Public
sector, which covers only Kuwaiti Nationals; 2) The oil sector labor law, which applies to both
Kuwaiti and gulf nationals; 3) Private sector labor laws, which applies to all migrant labourers
regardless of whether they work in oil industry or other industries in private sector. In general,
these laws are designed to help employees who have work-related injuries or medical conditions.
Workers compensation "benefits" include indirect coverage of access to medical care and
treatment (Sargeant, 2011).
There is an officially sanctioned workers’ compensation system; however, the percentage
of the workers receiving direct compensation is small. This is a consequence of the fact that few
workplaces actually pay into that worker’s compensation system (Occupational Safety and
Health, 2007). Private sector law has not been an effective deterrent in reducing the number of
work related injuries and fatalities among migrant workers. Few injured workers receive any
form of compensation. Retrospective government statistics show that the majority of workers
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involved in occupational injuries and fatalities were migrants employed in the construction
industry (Robert, 2008; Al-Tabtabai, 2002). In 2002, on average in the Kuwait construction
sector, which represents 7% of the total workforce in Kuwait, there were 98 reported serious
work related injuries and one fatality per month. Data on direct and indirect costs of construction
accidents were collected by the industry (1994-96) and suggested that the indirect cost of
workplace accidents is 17 times higher than direct cost (Kartam,1998). No data on occupational
diseases in Kuwait was found through our review process.
Construction injuries comprised approximately 58% of total occupational injuries during the
same period (1994-96). All workers were expatriates, 77% of them were unskilled and fractures
at different body parts were the major type of injuries. Physical disability was the outcome of
about 88% of injuries (Zawilla, 2008). A major problem is under reporting of work related
accidents and diseases, not because of a lack of capacity to statistically analyze recorded
occurrences, but rather because the system for notifying authorities about injuries is poorly
implemented. This is a serious issue at the national and enterprise levels, preventing priority
setting by decision makers (Occupational Safety and Health, 2007). The problem is further
complicated by vagueness in the definition of the term injury in the relevant International Labour
Organization (ILO) and Occupational Safety and Health (OSH) documentation meant to guide
national policy development (Occupational Safety and Health, 2007). The term injury is
proposed to cover a wide range of conditions ranging from broken bones to disabilities that
cannot be easily linked to traumatic bodily damage. Also, the term is focused on the event that
led to the trauma not on the disabling consequences of the injury for the injured worker involved.
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Magnitude of pain problems in Kuwait
Chronic pain is increasingly recognized as a major health issue in Kuwait and a well-
known consequence of everyday trauma, surgical procedures and workplace accidents (Hadi,
2006). A local survey reported a prevalence of 36% for musculoskeletal pain in females and 20%
in males. Knee and low back pain were the most frequent types of musculoskeletal pain in the
survey. Most of these patients were middle aged or elderly people, and trauma-related
musculoskeletal pain is the commonest source of their pain. The authors concluded that
musculoskeletal pain is a major health problem among Kuwaitis and deserves intense
government attention (Al-Tabtabai, 2002). A recent study conducted among 2,443 Kuwaitis aged
50 years and more illustrated that overweight and obesity is prevalent among 81% and 46%
respectively of the study sample (Badr H, 2013). The same study revealed that overweight and
obesity are independent risk factors for developing diabetes and osteoarthritis which were
present in respectively 50% and 38% of the studied sample. Both of those chronic diseases are
known to be associated with chronic pain (Badr H, 2013).
Many conditions commonly associated with pain symptoms such as those resulting from
motor vehicle accidents, work injuries and osteoarthritis are recognized as major contributors to
global disease burden as documented by WHO (Murray, 2013; Health statistics and health
information systems: GBD:WHO, 2013). There is little information about the quality of care or
levels of suffering associated with acute pain and chronic pain symptoms in Kuwait, especially
in the labor market.
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In the US workforce, a range of common pain conditions have been shown to impact
worker productivity (Stewart, 2003). Pain has been shown in small to medium size settings to
impact physical and mental health, to limit work performance and increase absenteeism (Allen,
2005). Importantly, chronic pain is now considered by WHO and the International Association
for the Study of Pain (IASP) joint declaration in 2004 as a disease and not merely a symptom.
Pain is no longer seen as related to an evolving injury but as reflecting pathophysiological
changes within the nociceptive system with psychosocial responses that perpetuate the problem
(Niv, 2003). Even with this evidence for the relationship between self-reported general health
statuses, chronic health conditions and pain and labor market outcomes, there are still some
major gaps in the understanding of the independent impact of pain on disability an interference
in worker productivity. Much of the suffering, discomfort and disability caused by injuries are
cumulative and chronic. Pain is usually an acute consequence of injury that sometimes develops
into a chronic disability, however in both cases an important element of the societal burden
associated with worker injury can be linked to disturbance of individual well-being and
productivity. Those disabilities are exacerbated by pain and mitigated by pain relief (Patel,
2010).
Delivery of Chronic Pain Services
Comprehensive pain management services for patients with chronic non-cancer pain
condition did not exist as of 2006 (Hadi, 2006). However, access to pain management services
began in Kuwait in 2008. In 2010, the Government of Kuwait launched a campaign called '365
Days, Kuwait without Pain” with the aspiration of making Kuwait pain free. The aim of the
campaign was to motivate Kuwaiti hospitals to provide access to pain relief treatment for any
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patient living in Kuwait. They reached out, spread awareness to the people of Kuwait about pain,
and pain relief medication options (Pain Free Kuwait: MOH, 2010). However, there are no
reports available on the impact, progress or follow up, associated with the campaign.
Currently there are only five doctors registered in Kuwait as pain specialists. They are in
charge of four governmental clinics. Among the six health areas in Kuwait, two pain clinics are
located in Sabah area (two specialized government hospital), one in each governmental hospital
in Farwaniya, Capital and Ahmadi. Patients who access these clinics are most likely to be
referrals from the hospitals where the clinics are located. Although some hospital departments do
refer patients to seek help in the pain clinics, direct referral from the PHC practitioners is
uncommon (Al-Doghaither, 2001; World Health Survey: Kuwait: Main report 2013).
In Kuwait, there is a lack of information concerning how people who suffer from chronic
pain can gain access to adequate pain treatment (Hadi, 2006). Moreover, the majority of care
providers are dealing with chronic pain without referral to pain specialists for evaluation or
specialized care (World Health Survey: Kuwait: Main report 2013). A common theme of several
publications globally is the failure of many governments and of health systems in general to take
appropriate steps to organize, coordinate, and support access to pain treatment services (Hadi,
2006; WHO, 2012; Arab times, 2013). Therefore, there is a need to identify barriers to such care
and to initiate strategic plans for making chronic pain management service available and
accessible in Kuwait.
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Expected Barriers in Delivery of Chronic Pain Management Services
An estimated 80% of persons worldwide do not receive adequate treatment for pain, and
severe under-treatment for pain is an acute problem in more than 150 countries (Health System
Profile: Kuwait, 2006). Access to pain medication is distributed unevenly among rich and poor
nations and between their rich and poor populations (Sullivan, 2005). Globally, the burden of
poorly managed pain is disproportionately borne by the most vulnerable: the poor, children, the
elderly, individuals with a history of substance abuse, the mentally ill, women, minorities, and
people of color (Sullivan, 2005). This global lack of pain management access by marginalized
populations raises significant global health equity concerns.
The global movement towards shifting public health investments from communicable
diseases to non-communicable diseases is also evident in Kuwait (Zurayk, 2014). This reflects
evidence for a trend towards increased prevalence of coronary heart disease, cancer and
accidental injuries with long term consequences (mainly due to road traffic accidents) (IHME
Kuwait (GBD) Report, 2010). Many of these conditions are accompanied by chronic pain, which
increases the burden of those conditions if pain is inadequately addressed and treated.
Little information is available on pain management in Kuwait. The World Health
Organization considers that barriers to access and management of chronic pain in health care
system could be financial, geographic, cultural, organizational and sociological; however each
society has a different reality. A summary of expected barriers to the management of chronic
pain in Kuwait based on existing evidence from international health reports (Sapir, 2010; Global
State of Pain Treatment, 2011; Soyannwo, 2010), are presented in table 5.
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Table 5: Expected Barriers of CNCP management in Kuwait
I. Care-provider
associated problems:
II. Patient associated
problems:
III. Health system associated
problems:
1. Lack of knowledge of
field of pain
management
2. Inadequate time spent on
pain assessment
3. Reservations related to
regulatory restrictions
4. Fear of addiction
5. Fear of unmanageable
side effects
6. Fear that tolerance will
complicate management
7. Lack of awareness of
pain clinics and their
services
Reservations about
reporting pain
Fear that pain indicates
disease is getting worse
Reservations about
reliance on medications
Fear of addiction
Fear of treatment
complications
Fear of tolerance will
prevent relief when needed
Lack of awareness about
pain clinics and their
services.
I. Low priority for treatment of
non-cancer pain
II. Lack of suitable remuneration
policies governing pain services
III. Complexity of distinguishing
between abuse and therapy
IV. Reluctance to facilitate
access to addictive drugs.
V. Challenges of individuating
pain management regimes.
VI. Lack of capacity to
monitor tolerance development
VII. Lack of program to
reward awareness about pain
clinics and their services
Table 5- Summary of expected barriers to the management of chronic pain in Kuwait based on
existing evidence from international health reports.
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Despite the existence of a range of well-established pain management strategies, there
are several obstacles to implementing effective management for chronic pain, resulting in a large
proportion of patients not achieving optimal pain control (Upshur, 2006). These barriers to the
clinical management of pain vary depending on whether they are viewed from the standpoint of
the patient, the physician, or the institution. Patients are usually uncomfortable with using pain
relief drugs or narcotics because of their known adverse effects, such as nausea, addiction, and
respiratory arrest (Lee, 2001; Albaqawi, 2014). However, when used under clinical supervision
as part of a rigorous care plan many of those complications could be avoided. Other barriers
include legal and social barriers (Borneman, 2010). However there is a negative social attitude
self-administration of morphine because of the legal barriers to access it, hence leads to general
scarcity of opiate analgesics in drug stores (Silbermann, 2012). There are also some barriers
concerning the medical team. These include failures of doctors and nurses in evaluating and
controlling the patient’s pain due to fear of legal and or administrative repercussions associated
with the prescriptions of even judicious uses of opiates (Narayan, 2010; Namukwaya, 2011).
Identification and acknowledgment of these barriers are a first step to overcoming them.
Successful initiatives to overcome patient, physician and institutional barriers need to be
multifaceted and integrative. Multidisciplinary initiatives to improve pain management include
dissemination of community-based information, education, and awareness programs, to attempt
to change attitudes towards pain treatment (Zuccaro, 2012). Adequate pain relief is a reasonable
and achievable goal for patients once barriers to reaching that goal are recognized, addressed,
and overcome.
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2.5. Patient Personas Illustrating Contextual Issues Impacting on Care and Compliance.
Understanding of pain patients and their needs is often limited and stereotyped. One way
of overcoming lack of understanding of barriers faced by users when designing new ways of
meeting their needs is to construct personas (Nielsen, 2013). With the goal of imagining how
chronic pain patients would fare in Kuwait, three patients’ personas were considered,
representing different population: a) a Kuwaiti national, b) a Gulf Arab national and c) a South
Asian National. All were imagined to suffer from a similar type of chronic pain problem. Their
conditions were developed by analyzing publicly available accounts of patient experiences
(Health Insurance Burden, 2013).
Comparison and contrasts of what the care experience of the different personas might be
like with respect to benefiting from access to chronic pain management services is summarized
in table 6. One of the most important challenges faced by all the three personas is availability and
accessibility to comprehensive pain management services.
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Table 6. Case Studies of Patient Personas-Kuwait
Table 6 represent the three kind of patients’ personas and their access to chronic pain management
services in Kuwait.
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Several studies had reported that chronic pain is associated with an increased prevalence
of anxiety or depressive disorders, especially amongst those who experience significant
limitations in their daily activities due to pain (e.g., work, social activities, family life) (Cunha,
2008; Bair, 2008; Castro, 2011). Sleep disturbance, fatigue, and decreased overall functioning
are also commonly experienced (Turk, 2008). However based on existing literature, most
services are often limited to mono-therapy rather than offering a comprehensive
multidisciplinary approach. This limited and often ineffective treatment of pain results in an
escalating cascade of health care issues (Carter, 2014).
Certain basic interventions should be incorporated into all treatment plans, for all kind of
populations. For example, significant reduction in health complications due to chronic pain
usually can be achieved through therapeutic interventions such as multimodal analgesia and
controlled prescription of analgesic drugs (Albaqawi, 2014; Marazziti, 2006). In addition,
individually assessed needs, risk factors and ability to afford recommended care must be
considered. There should be regular evaluation and audit of results, outcomes, complications
and side effects of treatment for these patients.
Possible Roadmap for Improving Pain Care in Kuwait
Continued efforts are required to overcome the known barriers to effective pain
management globally. Kuwait has an opportunity to lead the world in that regard because of its
centralized control over health system operations and its commitment to on-going
implementations of global best practices. A general multi-level trajectory for transforming
practice informed by this review is described in fig.8. At the Ministry of Health level, this would
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involve developing government policy on pain management and promotion of education
programs for health care professionals in Kuwait on pain assessment and management. The
Ministry could also be involved in mobilizing and empowering the broader public and political
leadership on the need and benefits of managing avoidable pain disability. Given the limited
number of pain specialists in Kuwait, other health professional have a crucial role to play in
implementing innovative comprehensive care solutions supported by a rich evidence base.
Support for greater continuity of care tracking and communication would ensure that quality of
care increases with increasing pain management coverage (Peabody, 2006). The third level of the
roadmap focuses on the broader networks of community groups and populations as stakeholders
of the deployment of chronic pain services. That level requires engagement of community
representatives in building broad-based awareness of personal social and economic benefits of
better and more comprehensive pain management. It would also involve community level,
bottom-up surveillance of the diversity of patients’ experiences. Advocacy for reducing the
disabling effects of pain through better pain management of pain becomes embedded in all parts
of the health system delivering care.
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Figure 8: Trajectory for Integrating Management of Chronic Care
Figure 7 describe the multi-level trajectory of CNCP care supported by the evidence.
304
In addition, the descriptions and recommendations set forth in this manuscript can serve
as a guide for clinicians, educators, administrators, and governmental or professional
organizations involved in the establishment and maintenance of standards for pain treatment
services in Kuwait. The proposed recommendations as set below reflect guidance documents as
published by international associations and are supported by a synthesis and analysis of the
current literature (Desirable Characteristics of National Pain Strategies: IASP, 1990; Pain
Treatment Services: IASP, 2009; Human Right Watch: IASP, 2009; Annual Report: IASP,
2011a; Practice Guidelines for chronic pain management: ASRAPM, 2010; Ayad, 2011). The
goal of this manuscript was to examine the case of Kuwait and how it relates to international
efforts to reduce the global burden of avoidable disability due to pain. The way in which Kuwait
rises to this global challenge locally will be globally significant.
Recommendations
While there is a consensus that more integrated and adaptable health system practices are
key to achieving improved health outcomes, there is less agreement on how to build these
dynamic characteristics into the system. What follows are recommendations based on this case
study about what needs to be considered if effective and safe management of chronic pain is to
be achieved in Kuwait.
Recognition and awareness of the magnitude of chronic pain problem
By raising awareness of the problem of a lack of organized chronic pain management
services and general access to acute pain relief in Kuwait, we can begin to change practices and
expectations would be changed. Thus, further desirable changes include enhancing the capacity
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of primary health care practitioners to provide direct care to chronic pain patients; putting in
place appropriate strategies to avoid transition of acute to chronic pain; and providing adequate
resources to support and expand existing specialized centers for chronic pain management as
documented in WHO study in primary care (Gureje, 1998).
Chronic pain care delivery
All personnel likely to be involved in chronic pain management should be adequately
instructed in the complex nature of pain and the need for comprehensive care. Multi-disciplinary
team work is central to successful pain management (Dysvik, 2004). Such training should
include communication skills, the use of assessment techniques, the application of appropriate
management strategies, and the use of relevant equipment appropriate for the level of resources
found in the country (McQuay, 1997; Morley, 1999). Of paramount importance is the
introduction of pain management instruction in medical schools and other programs that train
health professionals who could become involved in the comprehensive care (Kopf Andreas,
2010). Several organizations have produced comprehensive educational package protocols and
guidelines for clinical practice, including IASP (www. iasp-pain.org) (Practice Guidelines for
chronic pain management: ASRAPM, 2010; Kopf Andreas, 2010; Childs, 2008; Pain
management guideline. Hamilton (NJ): 2013). However, these items must be adapted to be
culturally appropriate.
Financial and research resources
Adequate funding is required for equipment, facilities, clinical research on pain, and
consultants specializing in pain management, allied healthcare professionals, secretarial and
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administrative staff. In addition, funding should be provided for all educational activities
including funding for training in advanced degrees related to pain science (Pain Management
Services: RCoA, 2003; Services for Patients with Pain: CSAG, 2000). Whenever appropriate the
educational activities should be integrated into those of interrelated departments (Dubrowski A,
2011).
Policy, governance and standardization
Provision of core services for chronic pain management is necessary in general and
specialist hospitals. Specialized pain management services should be organized locally and
regionally. Formal links should be established between hospitals on a regional basis so that all
appropriate treatments could be offered to patients who need them (The Royal College of
Anaesthetists report, 2009). Stakeholders should collaborate to develop, implement and evaluate
guidelines for best practices for the commonest chronic pain problems Pain management
guideline: Hamilton (NJ), 2013). While recognizing the need to regulate opioid usage (Furlan,
2010) authorities must strive to develop national policies and systems that enable patients to
safely access opioid pain medicines when needed. That access will, of course, need to be coupled
with well thought out and tightly managed systems for sourcing, storing, tracking and
overseeing use of the opioid medications while providing access to training regarding opioid use,
misuse and reactions (WHO: Cancer Pain Relief, 1996; McPherson, 2009). Encouraging links
between countries could lead to the sharing of ideas and problems, and exchange visits of
personnel to developed countries would help. Availability of vaccines with proven efficacy
against pain-inducing conditions (i.e., vaccine against Shingles and Post Herpetic Neuralgia) can
substantially reduce the prevalence of these conditions in certain populations (Harpaz, 2008).
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Successful implementation of opioid based therapy for chronic non cancer pain has been
reported in many developed countries (Furlan, 2010; Jay, 2006).
Special consideration for vulnerable population
When assessing chronic pain in vulnerable populations that face social and cultural
barriers to effectively communicate their experience of pain, the use of visual representation of
levels of pain had been reported to be helpful (Pain Management Services: RCoA, 2003). When
assessing and treating chronic pain, the clinician should consider non-medical features, including
age, sex, and lifestyle in Kuwait. There is a need to understand the complex socioeconomic,
cultural, psychological and political factors in Kuwait, in order to properly develop a standard
approach to pain management. Practices need to be adapted to accommodate the complex ways
that the experience of pain and responsiveness to pain management are influenced by the
surrounding socio-cultural context (Albaqawi, 2014; Parris, 1994).
Better Surveillance of Preventable Causes of Chronic Pain
Given the importance of guest workers in the Kuwait, there is a need for the National
labor force and patient registry to track incidence of occupational injuries on sites, health trends
in the population, improve the ability to prevent and treat diseases and contribute to healthcare
development for expatriates. Such a registry could provide a clearinghouse for data needed to
reduce occupational injuries and in that way reduce one important cause of chronic pain. The
data could include information on all the incidents, injuries and finalized treatments in inpatient
care; data on patients who were hospitalized in the emergency trauma and pain management
care; data on patients treated by physicians in non-primary care venues and measures for patients
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who received the comprehensive care. The data could then support research and evaluation of
practices that contribute to or reduce the burden of workplace injuries.
Conclusions
Kuwait has invested heavily in establishing one of the most modern health care
infrastructure systems in the region. The health system consists of both public and private
sectors. The bulk of health services are provided by the public sector, through by the Ministry of
Health. Equitable access to chronic pain management services is required for expatriates resident
in the country, and to provide effective relieve of pain resulting from occupational injuries. In
contrast to countries such as the United States and Australia there are no estimates in
Mediterranean Eastern Region of the national impact of the severity and frequency of pain
symptoms on labor force participation, absenteeism and presentism. This case study described
ways in which pain management is being addressed across the health system in Kuwait with
different population.
While there is an international consensus that integrated health systems of treating the
whole patient include pain and suffering as keys to achieve improved health outcomes, there is
less agreement on how to achieve these goals. The problem of under-treatment of chronic non
cancer pain is extensive in Kuwait and provides a focus for achieving comprehensive care. Until
under-treatment of chronic pain is considered a health issue, a significant percentage of people
using the Kuwait health system will continue to suffer with chronic pain and the numbers could
only increase. These patients may be under-treated or not treated at all. This deficit of care is
reflected in a dearth of chronic non-cancer pain specialists and specialized pain clinics. This
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situation is likely the result of a lack of awareness of the ability to manage chronic pain and of
the consequences of not adequately managing the condition. Equitable access to proper pain
management in Kuwait could improve the quality of life for all patients as well as make it easier
for health care providers to do their job.
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Appendix 2
Chronic Non-Cancer Pain Management Capacity in Karachi: A Case Study
Appendix 2 is submitted to Pain and Therapy journal on Feb 27, 2016
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Abstract
Chronic non cancer pain (CNCP) affects people everywhere in the world but people in
developing countries have far less access to therapies that provide relief. There are often missed
opportunities to implement these therapies. Karachi, Pakistan shares many of the characteristic of
megacities of global south and represents Pakistan in the global city league. This review reports
on availability of health management and pain services in Karachi for CNCP and their
comparability to those found in other global cities. The literature about CNCP and its
management in Karachi and Pakistan is scarce. Nevertheless, some conclusions can be made. In
order to inform a global cities audience, a brief review of current health system and pain service
in Karachi and Pakistan are discussed together with barriers that impede pain service outputs.
The present review uses the lens of vignettes using patient personas to represent expected
experiences with chronic pain and the likely impact of pain management services currently
available in public, charitable and private sectors in Karachi.
Keywords: Chronic non-cancer pain, Global cities, Pain management and services, Barriers
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INTRODUCTION:
Chronic non-cancer pain (CNCP) refers to pain of non-malignant etiology that lasts for
more than 3 months. It is widely regarded as a bio-psycho-social disorder (Breivik, 2013) that
requires recognition of its multidimensional nature for effective patient centered clinical
management (Fishman, 2009). The chronic disease model suggests that the societal and personal
burdens of such disorders can be more effectively treated through coordination of care where
patients are actively engaged in implementing personalized multidimensional treatment
strategies (Coleman, 2009). Lack of coordination found in developing countries increases the
burden of such problems and access to proven therapies. Indeed, a recent study indicates that
disabling CNCP is more prevalent in developing than developed countries (Johnson, 2013) and
that this high prevalence seems to be attributed to the limited treatment options and limited
access to chronic pain management services.
In a developing country like Pakistan, CNCP management services are not prioritized as
a clinical service because of many other competing concerns. As a result, even simple forms of
pain management are often absent (Rathore, 2011). Systematic information regarding the
prevalence and management of CNCP in Pakistan is not available. Even when patients do access
health care services, pain relief remains elusive (Treat the Pain: Pakistan, 2015). Several national
and international associations have recognized this situation as a global health challenge and are
collaborating, to encourage global solutions (Treat the Pain: Pakistan, 2015; Bond, 2004).
Cities ranked as global or world cities are recognized as important nodes in the global
economy. They share common attributes such as access to the latest innovations and world class
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human and technical resources. These resources include high-quality health services staffed with
practitioners trained at highly ranked educational centers. However, in rapidly urbanizing world,
world cities of the global south share a common burden of non-communicable diseases,
including pain that is more pronounced than in developed countries (Gayer, 2015). This review
examines the case of CNCP management in Karachi, Pakistan’s global city, and explores how
those services might be become more comparable to those found in other global cities.
This review takes the position that supporting development of advanced clinical services
like CNCP management services can be as effective as building hospitals or implementing
population level public health measures for promotion of the health and wellbeing. In addition as
urban residents are the engine driving urban development of mega cities as they become world
cities, reducing the burden of CNCP can be rationalized from both ethical and economic
perspectives. Conversely, documenting the landscape of CNCP management services will
provide a useful lens for evaluating progress in and barriers to health system development. The
purpose of this review is to assess the current status of CNCP management practices in Karachi,
(and Pakistan in general) and to highlight opportunities for ongoing development.
In order to understand the landscape of pain management and services available in
Karachi with respect to global cities, there is a need to first review the current federal health
system in which the city system functions. The review then explores structural factors that act as
determinants of pain management service availability in Karachi, as well as barriers that impede
implementation of global best practices. The present review also uses the lens of three patient
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persona’s interacting with different sectors of the Karachi health system: public, private and
charitable.
In order to reach the broadest possible external audience concerned with an interest in
CNCP management as a global health issue, a combination of case study (McLeod, 2008),
illustrative vignettes (Evans, 2015) and narrative review (Green, 2006) is used in this review. To
inform those methods, a comprehensive electronic literature search (1960–2015) was performed
using key words, a 1 in multiple databases b. In addition, official reports published in English were
also reviewed. Statistical data were obtained from the website of the Federal Bureau of Statistics
Pakistan. Grey literature, and references cited in relevant articles were also reviewed.
General Background about Pakistan
Pakistan is the world’s sixth most populous country with a population of over 180
million with one of the highest population growth rates in the world (Population Explosion: The
Tribune, 2015). It is estimated that 24% of the population lives below the poverty line (Faridi,
2013). About 2.8% of GDP is spent on health care, which is lower than any other neighboring
developing countries (The Pakistan Bureau of Statistics, 2016). The bulk of that expenditure is
1
a. “chronic non-cancer pain,” “chronic pain patient” “Pakistan,” “developing countries,”
“muskcoskeletal pain,” “neuropathic pain,” “causes,” “prevalence,” “pain management,” “pain
therapies,” and “treatment for pain”
b. Medline, Science Direct, Scholars Portal, Sociological, CINAHL, and Google Scholar
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directed towards support of tertiary healthcare that is accessed only by about 15% of the
population. Only 15% of the total health care budget or less than 0.4% of GDP is spent on
primary health care (Khan, 2011) An increasing proportion of the Pakistan population (38 %)
live in urban settings (The Pakistan Bureau of Statistics, 2016). Around 13% of the nations’
population, or 24 million people, live in Karachi.
As Pakistan undergoes economic development, changing lifestyles have resulted in the
growth of the burden of non-communicable diseases (NCDs). Deaths due to NCDs now far
outnumber deaths due to communicable disease (Jafar, 2013). This is relevant because the
burden of many of these NCDs is increased by associated CNCP symptoms (FDI Policy
Statement, 2015).
3.2. PAKISTAN NATIONAL HEALTH SYSTEM
Current Status of Health and Pain Services in Pakistan:
Most provincial governments are primarily responsible for health care management in
Pakistan. Every provincial government has Department of Health that serves to protect the health
of it population by providing basic health care amenities. There is a divide in spending on health
care in the public sectors across the provinces. Formulating national health policies is jurisdiction
of the federal government (The Pakistan Bureau of Statistics, 2016). There is a three tiered
system in which public, private and non- governmental sectors participate for providing health
care in Pakistan.
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Public health care is subsidized so that it can be offered at a cost low enough to make it
accessible to most residents. Patients that are treated in an Outpatient Department (OPD) of
public hospital do not have to pay for the consultation but do so when buying prescribed
medicines or other health products and services. In contrast, private health care is primarily a
fee-for-service system and covers a range of health care provision (Akbari, 2009). Despite
considerable advances in recent years, a lack of trained health care professionals and basic health
system infrastructure especially with regards to Physical Medicine and Rehabilitation is
recognized as an important limiting factor for more effective CNCP care in Pakistan (Rathore,
2011).
There is no government-sponsored health insurance scheme, but private health insurance
is available for those few who can afford it. Therefore, most of the population cannot afford to
access the health care system directly. To meet this need, several private charity hospitals have
emerged to provide free, high quality health care including pain management services, to the
poor (Khan, 2010).
In Pakistan, 79% of the population utilizes some aspects of the private health sector
(Akbari, 2009). In the private sector, there are some accredited outlets and hospitals, but also
many unregulated hospitals, non-medical general practitioners, hakeems, traditional/spiritual
healers, Unani (Greco-Arab) healers, herbalists, bonesetters (Shaikh, 2015). In general there is
little formal oversight health care delivery in the private sector. There are no formal watchdog
bodies, agencies or audit commissions set-up to monitor the quality of health care delivered to
patients (Anwar, 2008). A recent study revealed that between 1990 and 2013, Years-Lost-to-
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Disability from musculoskeletal disorders increased by 163% among women in Pakistan (Lim,
2013). Lack of quality care is an issue for all chronic illnesses and CNCP is a significant health
problem and commonly presented by patients suffering from complex chronic conditions
(Tunstall-Pedoe, 2006).
Currently, there are very few pain clinics established despite the introduction of pain
medicine specialty in the mid-1980s in Pakistan. Recently, health experts have expressed
concern over the absence of acute, chronic, cancer, and labour pain relief services in a majority
of public and private hospitals in all provinces (The Express Tribune with New York Times,
2014).
Unrelieved pain remains a national health problem; however, reliable data regarding the
prevalence and incidence of chronic pain are limited around all provinces and, particularly for
the city Karachi. To illustrate the scale of the problem from existing data, information from a
WHO collaborative study of pain in primary care (Gureje O, 1998) revealed that chronic pain
was present in approximately 5% to 33% of individuals in any global city. As Karachi is the
major global city of Pakistan, investment in pain management facilities could have an important
impact on its citizens’ wellbeing while stimulating health system development towards global
standards.
Karachi
Karachi is the capital of province Sindh, as well as the largest and most populous
metropolitan city of Pakistan and the main seaport and financial center of the country. Karachi
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metro has an estimated population of over 23.5 million people as of 2013 (Pakistan Economic
Survey 2013-14, 2015). It is also ranked as a beta global city (GaWC 2012, 2014). Currently
there are about 4,700 Katchi abadis (squatter settlements) which provide housing to 55% of the
residents of Karachi (Rind, 2013). These slum populations have poor living, health conditions
and very limited access to healthcare services (Gayer, 2015).
Health Care services in Karachi
Health care in Karachi is administered by both private and public health care providers
(Integrated Health care). Sindh province including Karachi, ranks lowest in public sector
healthcare facilities. Only 22 percent of its population used these facilities as comparison to 29%
in Pakistan. Thus 78% people in Karachi use private practitioners against 71%, in the rest of the
country (Akram, 2007). On average, there is one doctor available for every 1206 patients. For a
population of twenty million in Karachi, there are 134 private and public hospitals with total bed
strength of 21,170. Of this public sector hospital beds account for 11,550 while the private sector
has 9,520 hospital beds (Sultan, 2013). According to a government report, the rural areas had
well-designed district health systems but they were functioning poorly, while urban areas had an
almost “non-existent primary and secondary health care tier”. Thus, the few tertiary hospitals get
utilized beyond capacity. In Karachi, the three large government hospitals are overwhelmed by
the demands of 20 million people. Government statistics indicate that the percentage of GDP
being allocated towards health has declined from 0.7% in the fiscal year 2000-01 to 0.3% in the
fiscal year 2010-11 (Akram, 2007; The Dawn Newspaper, 2012). As a result, a majority of the
poor have to pay privately to get access to any health service, including the pain management.
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Significance of Chronic Pain in Karachi
Chronic pain is an important health issue in the adult population of Karachi and Pakistan
(Afshan, 2012; Sarwar, 2012). Recently, two different studies conducted in public and private
academic teaching hospitals in Karachi revealed a prevalence of chronic non cancer pain that did
not discriminate between the sexes with a female/male ratio was 1:0.9. Musculoskeletal
problems were the predominant cause of pain and most common complaint was low back pain.
The study found that a younger population with higher Numerical Rating Score (NRS) pain score
was to be found at the public teaching hospital, while at the private academic teaching hospital
the NRS pain rating was much lower and the population was older (Afshan, 2012; Sarwar, 2012).
Another survey revealed that most general practitioners (85%) lacked knowledge about modern
methods of relieving pain, especially interventional pain techniques. Also, the survey indicated
that nearly half of the GPs are unaware of the existence of pain clinics and about pain physicians
(Afshan, 2013).
Despite the fact that the national or international high prevalence of chronic pain is
undisputed, there remains a lack of scientific evidence pertaining to precise prevalence and types
of management services offered for chronic non-cancer pain in Karachi and Pakistan.
Pain Services in Karachi
In Karachi the idea of pain management, especially through the agency of a specialized
“pain clinic”, is an evolving concept and very few institutions offer these services. The first
multidisciplinary pain clinic to be established has been run by Aga Khan University Hospital,
Karachi since 1998 (Afshan, 2012). CNCP management is primarily regarded as an anesthesia
sub-specialty, though experts from other disciplines are also involved. Currently, there are only
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two government hospitals and three private hospitals with Pain Management Clinics in Karachi.
The directors and clinicians at those clinics are primarily anesthesiologists (Dr Safia Zafar, in-
person information, 2014).
The geographical distributions of the clinics are unplanned and are not designed for
maximum benefit by the general population of Karachi. There is lack of information concerning
how people who suffer from chronic pain gain access to adequate pain treatment. Also, there is
lack of awareness, particularly among primary health care physicians, about presence of pain
clinics in Karachi, Pakistan. Therefore, a majority of these general physicians provides CNCP
management without having any specialization in the subject and do not refer to a pain specialist.
In comparison to private hospitals, very few public hospitals have pain clinics in Karachi (The
Dawn Newspaper, 2012). Private sectors clinics are very expensive. Therefore, many pain
patients in Karachi seek pain treatment from traditional healers (hakims and ‘pehlwans’) both for
pragmatic as well as for cultural and economic reason (Mohyuddin, 2014).
In addition, many patients’ visit the informal healthcare practitioners (HCPs),
physiotherapists and occupational therapist for their ongoing pain. Hospitals in Karachi, Pakistan
do not follow the multidisciplinary approach for CNCP and rehabilitation recommended by
international bodies (Gayer, 2015).
As a result, allied health professionals often are unaware of pain clinics and therefore
deal with their patients’ pain independently of those clinics. This is particularly true with respect
to the pain management services supplied by Physiotherapists working independently in the
private sector or running physiotherapy departments in government hospitals. Provisions have to
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be made to transform delivery of chronic pain services into an integrated system, through
improved coordination and communication between various healthcare sectors and professions.
In a recent conference, a Pakistani anesthesiologist mentioned that morphine and other
opioid analgesics had a very crucial role to play in all kinds of chronic pain management, but
these were not available in hospitals in Pakistan. The reason identified was the time-consuming
procedure to procure those drugs for their hospital and their patients. A global study from the
Global Opioid Policy Initiative reveals a pandemic of unbearable pain affecting billions, caused
by over-regulation of opioids and morphine (Clearly, 2013). However, there is no specific study
related to opioid availability and accessibility for CNCP. Patients usually have to be given
injections in the clinic to manage even acute pain with opioids. This is true even though
morphine injections can be substituted by oral doses of morphine, which is not a costly or as
dangerous as injectable formulation and is more effective as a pain reliever. However, World
Health Organization recommends oral administration for CNCP, if possible. There is a need to
create awareness among both clinicians and the general public about optimal use of these
analgesics (The Express Tribune with New York Times, 2014).
Globally, Pakistan is one of the countries with the highest rate of injection usage (The
World Medicine Situation: WHO, 2004). In comparison to national level, Karachi has 13 %
more usage of injections (Raglow, 2001). Relief from severe pain was an important reason for
injection therapy, as many patients were unable to tolerate pain and consider injections were the
only form of treatment for immediate relief (Agboatwala M, 2004). However, there are no
published data around the use of injection for CNCP relief.
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In 2014, the Fellow College of Physicians and Surgeons Pakistan (FCPS) had approved
specialization in pain management as a subspecialty of anesthesia. It is a first step towards
developing this important field in Pakistan (The Express Tribune with New York Times, 2014).
Aga Khan University Hospital offers a fellowship in pain management to the anesthesiologist
after their successful completion of anesthesia residency program (Afshan G, 2012). A private
medical university in Islamabad offers a Master’s program in pain management; for
anesthesiologist, and many anesthesiologists from Karachi enroll themselves in it (Dr Safia
Zafar. in-person information, 2015). Key informants acknowledge that pain management training
remains inadequate in medical schools across Karachi. In particular, graduates entering clinical
practices are inadequately trained in inter-professional collaboration for pain management.
Recently, a group of anesthesiologist, with IASP support, delivered courses to family
physicians in several Pakistani cities on “Pain Education and Services” (NAYS Newsletter,
2013; Gauhar, 2015). The researchers who organized these educational activities in Pakistan are
from Karachi. CNCP education and delivery of management services seems to be better in
Karachi in comparison to the rest of Pakistan. However, there are no reports available on the
impact, progress or follow up, associated with those workshops. Many private and public
hospitals conduct pain awareness programs and workshop for patients, general practitioners and
for residents throughout the year (Dr Safia Zafar. in-person information, 2015). However, those
pain management programs are delivered in an ad hoc manner and are not staged strategically to
reach a wider general population.
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Given the complex nature of the health care delivery system in Karachi and the limited
resources available for the management of CNCP, it is instructive to explore how existing CNCP
services are offered by different health sectors in Karachi.
Vignette
Health professional interactions with patients are complex, and occur in an ad hoc
manner. There is likely to be a certain lack of coordination of the interaction between patient,
health professional and institution. This lack of coordination, in turn is likely to contribute to
under-treatment of chronic pain and missed opportunities to reduce the CNCP burden. The
present review uses a clinical vignette approach to illustrate expectations of how the care
received by CNCP patients within the three main health sectors (private, public and charitable
organizations) could impact on outputs of services provided by pain clinics. Vignettes are
standardized case studies that are not fully realistic, but are comparable across clinicians and can
be used for most outpatient conditions. The goal of the vignette used in our review is to illustrate
how common conditions are likely to be dealt with in a setting that is typical to the sector, while
allowing comparison across sectors. The following Vignettes are adapted from treatment
program cases, which provide a glimpse about patients’ experiences (Table 7) (Patient
Testimonial: The Orthopedic Centers website, Pakistan http://www.kktpakistan.com/patient-
experience/).
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TABLE 7: CASE STUDIES OF PATIENT VIGNETTE
Case 1
Pakistan National
Case 2
Pakistan National
Case 3
Pakistan National
Private Charitable Public Sector (used by all Pakistani and
refugees)
Mr X, 29 yrs,
Present complaint: Suffered low back
pain 6 years before after slipping at
work as a manager, unable to work
since. Gradually developed antalgic gait
spreading pain to his upper thigh, knees
and wrists ankles.
Associated complaints: fragmented
sleep, weight gain, depression, very
high disability.
Medical and psycho-social history:
Investigations showed minimal
findings, not explaining multisite pain
and exuberant level of disability. Failed
conservative management Discontinued
a re-training course due to worse Low
Back Pain.
Mr Y, 29 yrs,
Present complaint: Suffered low
back pain 6 years before after
slipping at work as a painter, unable
to work since. Gradually developed
spreading pain to his upper back,
knees and wrists.
Associated complaints : fragmented
sleep, weight gain, very high
disability
Medical and psycho-social history:
3 back surgeries, but the last two
failed to provide him with any pain
relief. On medication for at least 7.5
yrs. with intermittent epidural
injections for the last year. Has
stopped working fulltime, but
continues irregular part time work.
Is currently managing the pain with
pain medication.
Mr Z, 29 yrs,
Present complaint: Suffered low back
pain 6 years before after slipping at work
as a painter, unable to work since.
Gradually developed spreading pain to
his upper back, and knees.
Associated complaints: fragmented
sleep, mood with periods of irritability
and very high disability.
Medical and psycho-social history:
Disabling LBP with radicular symptoms
in right leg. Initially, stopped working for
6 weeks. Attended and passes a
functional capacity evaluation.
Attempted to return to work .This failed
citing increasing and intolerable pain
after the 3rd day .One year has passed
since Return to Work. Want to avoid
intervention and prescribing medication
because of financial constraints and
limited insurance. Radiologically, he has
an extruded disc herniation at L5-S1 and
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Table 3 summarize the care received by CNCP patients within the three main health sectors
(private, public and charitable organizations) in Karachi.
Assessment: O/E looks despondent,
sweaty, disheveled, sleepy and asked to
lie down, with multiple verbal and non-
verbal pain behaviors, with hand
shaking and very limited range of
lumbosacral spine movements. Rated
pain 10/10.
Expected Outcome: Prescribed long
term pharmacotherapy without any
benefit. Despite being treated at private
hospital with full access to health, pain
ratings remain high with extreme
disability. Morbidly depressed with his
depression not been well addressed and
treated.
Assessment: O/E, he was an
overweight deconditioned man who
dozed off constantly but sat
comfortably during most of the
interview despite 8/10 pain ratings.
Expected Outcome: Interventions
and medications have provided
partial pain relief though continues
to experience persistent pain and
partial disability. As treated at the
charitable hospital where all the
convenience and limited health
plans, but still pain untreated.
was a suitable surgical candidate.
Assessment: O/E looks despondent, with
verbal and non-verbal pain behaviors,
Rated pain 13/10. His gait was normal,
although intermittently appeared antalgic
favoring the right leg. He able to stand
on his heels and toes without difficulty
He was limited to a 50% squat due to
weakness across the left leg.
Expected Outcome: His interventions
and medications have provided him with
partial pain relief though he continues to
experience persistent pain and disability.
As treated to public hospital, he has
limited access to health plans, therefore
pain remain untreated.
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As noted in the vignettes, all patients are treated at a single modality pain clinic. Long-
lasting pain results in profound changes in pain perceptions, pain thresholds, coping, enjoyment,
social and professional life, and mood (Coleman, 2009). Because of the complexity of chronic
pain, no single discipline has the expertise to assess and manage it independently. A
multidisciplinary team approach is considered to be the optimal therapeutic model for CNCP
patients (Ospina, 2003). For the care to be delivered in a coordinated manner, the clinicians
should familiarize themselves with evidence based treatment guidelines. To improve pain
management and for the patient to have a quality of life clinicians should use treatment and
clinical activities that suits the needs of the patient (Loeser, 1990). However, existing literature
supports the reality of vignettes that most clinics are often limited to mono-therapy rather than
offering a comprehensive multidisciplinary approach in Karachi (Rathore, 2011).
Vignettes make an important contribution to knowledge because they allow some
understanding of the distribution of proficiency in the different health sectors. In developing
strategies and management skills for chronic pain, the barriers that hinder the progress of CNCP
management have to be taken into consideration in Karachi.
Barriers in Delivery of Chronic Pain Management
There are many systemic factors related to the healthcare system, healthcare
professionals, and healthcare users that contribute to the burden of unrelieved pain. Many of
those factors are the same as those recognized as needing to be dealt with 20 years ago in
developed countries (Lohman, 2010). Also, the lack of chronic pain management options for
marginalized and special populations (children, elderly) within countries raises significant health
equity concerns. But those factors continue to limit access to CNCP management in both
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developed and developing heath systems (Cherny, 2010; Silbermann, 2012; Zuccaro, 2012).
After reviewing the existing literature related to rehabilitation and pain management services in
Karachi and Pakistan, the following are the potential barriers that may affect the patient’s pain
assessment or treatment adherence (Rathore, 2011; The Express Tribune with New York Times.
2014; Hamid, 2015)
Thus the pain management crisis that results from these systematic barriers requires a
solution for a CNCP management. Identification and acknowledgment of these barriers is a first
step to overcoming them. Successful initiatives to overcome patient, physician and institutional
barriers need to be multi-dimensional and integrative. Key informants suggest that a need and
opportunity to invest in pain management services in Pakistan is starting to be recognized (Dr
Safia Zafar. in-person information. 2014).
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Table 8: Barriers to Effective Chronic Non- Cancer Pain in Karachi
Table 8. Barriers to Effective Chronic Non- Cancer Pain
Healthcare Professional Barriers Inadequate knowledge of treatment options
Inaccurate evaluation of pain
Legal issue for legal substances
Concerns about addiction
Fears of respiratory depression
Pharmacologic Tolerance
Pain Management is a low priority
Cultural or social barriers
Inadequate reimbursement for physicians
Healthcare User Barriers Under-reporting pain
Fears that disease is worsening
Shifts focus from disease
Fears of addiction
Fears being identified as an “Addict”
Poor Compliance
Reliance on traditional medicine
Cultural or social or religious barriers
Healthcare System Barriers Limited specialist or treatment access
Formulary limitations
Opioids unavailability (Quantity)
Inventory systems restriction
Pain management is a low priority
Regulatory requirements/ Restrictive regulations
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Opportunities for Chronic Pain management in Karachi
Chronic pain varies greatly in type, intensity, frequency and prognosis, which effects the
quality of life. The goal of pain treatment facility is not to cure disease, but to improve the
quality of life and allow the CNCP patient to function as effectively as possible.
Resources and patient demands vary throughout the world, and there is no single
guideline that can be made which will apply to every location. Following strategies set forth in
this manuscript can serve as a guide for clinicians, educators, administrators, and governmental
or professional organizations involved in the establishment and maintenance of standards for
pain treatment services in Pakistan (Figure 9).To improve pain care, there are proposed
recommendation by various international associations for different stakeholders in developing
nations. The suggested recommendations are the synthesis of the current literature presented to
improve the pain management services and facilities, including the resource limited settings
(Breivik, 2013; Fishman, 2013; Practice guidelines for chronic pain management: ASRAPM,
2010; Annual Report: IASP, 2011a; Kopf, 2010; Peabody, 2006). These recommendations are
not intended as representing necessary standards. Rather it is recognized that these idealized
practices will need to be adapted to the needs and constraints of the Karachi and Pakistan’s
health system (Figure 9).
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Figure 9: Opportunities for Chronic Pain Management in Karachi
Figure 9 -suggested recommendations from the current literature to improve the pain
management services and facilities in Karachi.
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Summary of Recommendations
1. There is need to provide infrastructure and systematized services for the treatment of
chronic pain by the primary care providers such as, rehabilitative services, behavioral
medicine and medications, as per patient needs.
2. If primary service prove to be not serving its purpose more specialized services and
multidisciplinary approach has to be used for more complex cases.
3. In order to take into account various disciplines of health professional services have to be
integrated and coordinated for comprehensive delivery of care.
4. For optimizing treatment of CNCP patients, health care professional need to have
professional development at all levels of health care system.
5. A rigorous curriculum in pain education at the undergraduate level in medical schools
should be introduced. In order to encourage interfaculty and inter-professional
curriculum, short courses must be offered to graduates. Chronic pain patients need to be
viewed as part of the solution; they require education about pain, including self-
management strategies.
6. Quality of care and its outcomes associated with chronic pain have to be analyzed
systematically. Increase awareness of the public about the importance of seeking
healthcare for CNCP for better prognosis rather than depending on traditional methods.
7. Facilitate the availability and accessibility of chronic pain management services across
the city to ensure equitable and sustainable healthcare service development, based on the
guideline provided by WHO policy for pain management.
332
8. Give special consideration for the CNCP assessment and management for people with
special needs (e.g. children, older adults, developmentally challenged, cognitively
impaired)
9. Encourage physicians to engage in research in the area of chronic pain management in
Karachi to make evident data about the magnitude of the problem among different strata
of the population and the impact of different approaches on management prognosis.
3.8. Conclusion:
In conclusion, the challenges facing chronic non cancer pain management in Karachi, are
numerous and multi-faceted. The health system consists of both public and private sectors.
Majority of the health services are provided by the private sector. There are large numbers of
patients and insufficient data, making planning for the future very difficult. Future planning of
pain management is becoming extremely difficult due to large number of patients, insufficient
data, lack of infrastructure, variation in providing health care and scarcity of trained
professionals. Although there is a lack of culture of research, it is developing slowly. Prospects
will become apparent as that culture of research and reflection evolves. This review concludes
that there is the need for greater education of health care providers, patients and involvement of
government, educational and professional society institutional actors in advancing internationally
recognized CNCP practice standards (Breivik, 2013; Fishman, 2013). A crucial need of easy and
prompt access to pain management drugs as well as the establishment of chronic pain
management services at all public and private sector hospitals are recommended.
Word count: 4026, number of figures: 1, number of tables: 2, number of references: 52
333
Conflict of Interest:
There are no financial relationships that might lead to a conflict of interest.
Contribution Statement:
This paper is the result of a shared reflection of the authors. S.F.L conducted the
search strategy and reviewed the existing papers. S.F.L and P.P wrote the main paper.
M.A, S.Z, H.E.B provided and wrote the Supplementary Information concerning the
local context. AM provided critical input as a CNCP expert. All authors discussed the
consequences and implications and commented on the manuscript at all stages. The
manuscript was read and approved by all authors.
334
Appendix 3
Case Study: Situation of Health Services for CNCP management in Toronto
Appendix 3 is written in the style of an article appropriate for Journal Pain Research &
Management
335
Abstract:
There is increasing recognition that chronic non-cancer pain (CNCP) is a multifaceted disorder
associated with considerable disability to the patient, and burden om the health care system and
society overall. The evolution of the organizational structure of the health systems in Toronto is
described. This are discussed in terms of the system’s their impact on the delivery of
comprehensive chronic pain management service by health professionals in Toronto. This review
is structured as a case study of the availability of management services for people living with
chronic non-cancer pain within the Toronto health care systems. In order to close the gap
between existing CNCP care and the potential for optimizing CNCP care, significant barriers to
this goal must be addressed. There is an increasing need to integrate best practices and achieved
benchmarks in CNCP management in Toronto. The following review proposes to an adapt
approach to pain management based on the recommendations of IASP and Declaration of
Montreal according to the viability, to accelerate the benefits for improved health, and strengthen
Toronto’s health care system for the delivery of chronic pain management.
Key words: Chronic Non Cancer Pain, Toronto Health system, Pain services and management
336
Introduction
Chronic diseases are the leading cause of disability in North America. Research has
documented that of Canadians over the age of 20 years, 3 out of 5 suffer from a chronic disease
and 4 out of 5 are at risk of developing a chronic condition (Public Health Agency of Canada,
2013). Chronic conditions are often related to chronic pain that last longer than three months,
after that they become a burden on healthcare system and on the economy (Dalli, 2011). Chronic
non-cancer pain (CNCP) affects one in five people in Canada (Schopflocher, 2011). It has been
estimated that overall prevalence varies from 16% to 41%. Studies consistently report higher
prevalence amongst women, older Canadians and the socially disadvantaged. There are no
discrepancies with respect to access by rural Canadians as compared to city dwellers (Lynch,
2011b, Schopflocher, 2011). Chronic pain is more common among manual workers and the
unemployed than among professional workers (Lakha, 2012). The total cost of chronic pain in
Canada has been estimated to be is $56-60 billion dollars annually (Canada Pain Fact Sheet,
2014). In this paper, the terms chronic pain and chronic non-cancer pain (CNCP) are used
interchangeably. Chronic pain remains a silent epidemic in the Canada because it is not yet
recognized it as a health priority. Many international associations and countries including
Canada recognize access to pain management as a fundamental human right (Declaration of
Montreal IASP, 2010).
In Toronto, CNCP has a tremendous impact on an individual and on the society, with
pain-related illness costing taxpayers billions of dollars annually (Dubin, 2015). An
epidemiological and cross sectional study reported that CNCP affects one out of five people in
Toronto (Trip, 2006; Moulin, 2002). CNCP is also associated with behavioral effects such as
337
reduced mobility, increased health ca\re utilization, and psychological comorbidities such as
depression (Breen J, 2002). A Toronto study (Juurlink DN, 2004) indicated that among medical
illnesses, chronic pain was the second major cause of suicide, second only after bipolar disorder,
and ahead of depression and psychotic disorder.
It is important to understand the social, cultural and geographical dimensions of Toronto
as a ‘global city’ of Canada (Sassen, 2006; Keil, 2003) where thousands of adults and children
are suffering from chronic pain. There is no connection of global cities with advent of CNCP in
the literature. With the rapid rate of global city growth and the concurrent demand for improved
health services and pain management, city executives have to make smart policy and planning
decisions focusing on sustainable, and resilient infrastructure for delivery of chronic pain
management to address this health issue.
In Toronto, health-care services for CNCP patients can be offered in an unidisciplinary or
a multidisciplinary setting. Within these settings, practitioners may follow different “models of
care”, such as biomedical, psychosocial, or rehabilitative approaches. While, guidelines about
how to best manage chronic pain have been developed, but they are not fully supported by the
current health system. Services offered to CNCP patients in Toronto are fragmented and waiting
times at all levels of the health-care system are long (Lakha, 2015). The few existing
multidisciplinary pain clinics (MPCs) lack adequate resources to provide care according to the
modes of intervention supported by the evidence and are not always available or accessible to all
residents (Peng, 2008). Healthcare practitioners receive minimal training in chronic pain and
there are no licensure requirements for pain management training for Canadian physicians
338
(Lynch, 2008; Watt-Wattson, 2011). Up to now, the exact number of pain specialists in Canada
is unknown, but it is likely a small number (Peng, 2016). Despite impressive progress in
understanding pain from a physiological perspective in recent decades, advanced research and a
robust plan is needed to guide management of patients with CNCP in Toronto.
To understand the background of pain management and services available in Toronto in
a way that is comparable to other global cities, we need to analyze the existing health care
system, organizational structure of delivery of care, and availability of pain management
services. A discussion of the obstacles that impede access and compliance to chronic pain care
plans is included here. A comprehensive search process was used to discover this information.
This took the form of an academic literature review using online databases such as PubMed,
Scholars Portal, Sociological Abstracts and Google Scholar. We searched previous materials
published in peer-reviewed journals and grey literature, in a systematic manner. References cited
in relevant articles were also reviewed. This article is the combination of case study and narrative
review, to clarify the system to the external audience of the global cities. In summary, the overall
aim of this review is to provide a description of how the Toronto health system deals with the
challenges of chronic pain management.
Canada/ Toronto Health System Background
Geography and Demography
Canada is one of the world's most developed nations, with the ninth highest per capita
income globally, and the sixth highest ranking in human development. Canada has a population
of approximately 35 million as of 2013, in its ten provinces and three territories (Stats Canada,
339
2013). Toronto is the provincial capital of Ontario, and the most populous city in Canada and
fourth in North America (Census Canada, 2011; Economic Dashboard report, 2013). Situated in
Southern Ontario Toronto encompasses a geographical area formerly administered by six
separate municipalities (North York, East York, York, Etobicoke, Scarborough and the former
city of Toronto) and the old city area known as Downtown. According to Census Canada,
Toronto’s had a population of 2, 615, 060, accounts for approximately 9 % of Canada’s
population. Life expectancy in Toronto for females was 85.4 years and males was 80.7 years.
Children below 14 years made up 17.5% of the population, and those above 65 years made up
13.6%. Women (52%) outnumber men in all age groups over 20 (Census Canada, 2011).
International migration is responsible for two-thirds of the population growth in 2013-2014
(Stats Canada, 2015). As of 2013, more than half of Toronto‘s residents were born outside of
Canada and identify themselves as a visible minority (Stats Canada, 2015). Immigrants and
refugees clearly make an impact on the changing size of the population. These demographic
changes have high implication on health sector, including delivery of pain management services.
Local Health System Background
Health care in Canada' is delivered through a publicly funded health care system, which
is mostly free at the point of use (CBC, 2006). It is guided by the provisions of the Canada
Health Act of 1984 (Canada Care Act, 1984). Public funding accounts for around 71% of total
health care spending and the remaining between private insurers (13%) and consumers’ pocket
expenses (14 %) (Thomson, 2012). In general, health system governance in Canada has evolved
to focus on two parties: the regional health authorities (RHAs) that govern the health services
340
that fall under their corporate umbrella and the provincial Ministries of Health. In 2010, Canada's
total health care expenditures was 11.7% (or $5,614 CDN per person) of GDP (Thomson, 2012).
Toronto has a publicly-funded health care system, which is available through the Ontario
Health Insurance Plan (OHIP). OHIP covers all medical services but not psychological or allied
health care related to patients. The provincial and territorial governments fund these services
with assistance from federal cash and tax transfers from several revenue (i.e. taxpayers’ dollars).
Hospitals in Toronto are autonomous organizations governed by independent boards of directors
(Health Canada, 2015). The Ontario province provides supplementary benefits, such as drugs
prescribed outside hospitals, ambulance costs, and hearing, vision and dental care that are not
covered under OHIP, but only for low-income residents and seniors. Individuals and families
who do not qualify for supplementary benefits pay these costs directly (out-of-pocket), or are
covered under an employment-based group insurance plan or buy private insurance. In Toronto,
new immigrants are eligible for OHIP three months after their arrival. In June 2012, the Federal
Government announced significant reductions in the health services and eliminated the health
services for refugees. These constraints require new models of services delivery which
encompasses all chronic conditions including pain management (Health Canada, 2015). This
was, however, recently reversed when a new Federal Government was elected.
Toronto has 170 health service clinics and the highest proportion of teaching hospitals
(Toronto LHIN report, 2013). There are 2.1 physicians and 2.1 hospital beds per 1,000
population. Out of current physicians practicing 13.8 % of specialists and 15% of family
medicine physicians are 65 years of age or older (Ontario Health Coalition Fast Facts, 2016).
341
The average Toronto resident made 3.7 visits to a GP/FP and 37% of these are for chronic pain
(Chan, 2005). Pain is the most common reason for seeking health care and accounts for 78% of
visits to emergency department (Todd, 2007).
In 2011, Local Health Integration Networks (LHIN) were introduced to administer and
provide health services at the regional level. As a major part of the network strategy, LHINs
provides several services to CNCP patients. Recently, a new project known as Extensions of
Community Healthcare Outcomes (ECHO) Ontario was initiated, to provide education in regards
to chronic pain. ECHO Ontario connects primary care providers in Central, Central East and
North West LHINs with pain, addiction and mental health experts. This "hub and spoke" model
uses videoconferencing to provide case-based training and share best care methods (Dubin,
2015). Additionally, Ontario has an independent workers' compensation agency (WSIB) funded
by employers, which funds services for workers who are injured on the job and suffer from
chronic pain (Ref).
Current Organizational Structure of Health Services delivery:
The Toronto health care system is a complex network of different health care
organizations and providers, working together to meet the health care needs of Toronto residents.
The Ministry of Health and Long-Term Care (MOHLTC) provides overall direction and
leadership for the system.
342
Primary health care
Primary care is usually the first contact for patients requiring relief from any health
condition including chronic pain. Family care providers are well positioned to help patients
navigate the system, particularly patients with multiple complex conditions and disease including
pain. Family physicians are responsible for referring their patients to the specialists and
following up on patients after they are discharged from the hospitals. Patients are free to choose
their own physicians. A number of allied health care personnel, e.g. nurses, midwives etc. are
also involved in primary health care (Public Health Agency of Canada, 2009).
Public Health Services
Public health services in Canada’s province and cities e.g. Toronto were initially
established to control the spread of infectious diseases, ensure public sanitation and, to some
degree, provide basic health education to the population. Public health services, nowadays focus
more on wellness model and administer care through local or regional health units. Chronic pain
is a challenge to public health system for a number of reasons that have to do with prevalence,
seriousness, disparities, vulnerable populations, and the utility of population health strategies
(Public Health Agency of Canada, 2009).
Secondary and Tertiary care
Another access for the health care system is through the hospital emergency room.
Despite the wide availability of primary care physicians, certain subgroups of the population,
such as the homeless, tend to use the emergency room as their primary access point for health
care. Also, it is common for patients suffering from chronic pain to visit Emergency Department
343
(ER) for pain control. Provincial governments due to the cost of emergency care generally
discourage this practice.
Specialized ambulatory physician care is provided on much the same basis as general
practitioner care. Access to specialists, allied providers, admissions to hospitals, prescribing
necessary diagnostic testing, treatment, and prescription drug therapy is under the GPs and
specialist control. Specialists who deal with these matters have specialized training and must be
certified with specialty - specific diagnostic tools and treatment. While Canadian specialists are
defined as Fellows of the Royal College of Physicians and Surgeons (RCPS) in different
specialties (medical, surgical etc.) after completion of very specific training and examinations,
the term “pain specialist” is used loosely here by convention, to indicate different medical
doctors who deal with pain diagnosis and management. These physicians can be specialists in
Anesthesia, Physical Medicine, Neurology, Rheumatology etc. or hold Family practice
certification by the Canadian College of Family Physicians. Formal subspecialty and Royal
College certification is pain management was recently created and can be obtained by a limited
number of RCPS specialties after undergoing vigorous additional training. Pain specialists (as
defined above) work in pain clinics, which may be in the hospital or independent facilities. Their
focus is on the diagnosis and management of chronic pain. Pain management clinics refer for
specific diagnosis or pain related to specific part of the body. Few of them use a
multidisciplinary approach to help people take an active role in managing their pain and thus
regaining control of their life (as non-medical services are adversely affected by lack of funding).
These programs are focused on the overall being of a person, rather than just the pain. Many
specialists who maintain private practices are mostly affiliated with hospital as a staff or in the
344
out - patient clinic. Toronto is also host to a wide variety of health-focused non-profit
organizations that work to address specific illnesses and chronic pain condition for Toronto
residents (Public Health Agency of Canada, 2009).
Social care
Community care services are organized on two fundamental levels: institution-based care
and home-based care. Community institutional care is largely focused on the provision of long-
term care, chronic care and, chronic pain management. These institutions range from residential
care facilities, which provide only limited health services, to intensive chronic care facilities,
which care for high need institutionalized patient. LHINs facilitate several workshops for chronic
disease include pain management that improves lifestyle in these facilities.
4.3. Delivery of CNCP Services in Toronto
In Toronto, the current system for CNCP care is not coordinated and balanced, leaving
many patients misdiagnosed, inappropriately treated or under treated, and living without a
quality of life. CNCP is often associated or is the result of other diseases, and therefore
inadequately recorded, both in clinical records and in the administrative coding that is used as a
source for epidemiological studies. CNCP includes various group of diagnoses and syndromes
(e.g., chronic low back pain, fibromyalgia, neuropathic pain, migraines etc.) (Sessle, 2012),
therefore treatment options vary (Sessle, 2012). Treatment of complex CNCP needs highly
specialized approaches (medications, injections, spinal cord stimulators, implantable pumps,
psychological therapies, exercise therapy, etc.). Many of these options (with the exception of
injections) are often unavailable or have to be paid by the patient. Given the fact that the
345
publically funded health care system covers medical consultations and acts and laboratory tests
in general, injections are the only modality paid by OHIP, resulting in substantial costs to the
provincial health care budget. Only community-based interventions (injections) are estimated to
cost to the system approximately 80 million dollars yearly with 6% of patients seen repeatedly
over a period of years accounting for 41% of the injection expenditure, totaling 215 million
dollars for the period 2005-2012, that OHIP data are available (MOHLTC symposium
presentation, Canadian Pain Society, Vancouver, May 25, 2016). Undertreated or inappropriately
treated CNCP results in financial burden on the patient and public health care system. The costs
of chronic pain to the Ontario (including Toronto) have been estimated to be more than 2.1
billion a year in direct healthcare costs, and $13 billion per year in productivity costs related to
job losses and sick days (Action Ontario, 2014).
Pain medicine experts agree that the successful management of CNCP requires a
multidisciplinary approach (Flor, 1992). Early studies proved the effectiveness of the
multidisciplinary treatment with improvements in pain, mood, and behavioral changes such as
return to work or use of the health care system (Flor, 1992). However, there are very few such
programs in Toronto. Patients often face long waiting lists to access the clinicians who do
understand their pain. In addition, patients find themselves struggling their health care coverage
while hoping to benefit from the pain management programs (Jerant, 2005).
In modern medicine, specialized training for pain remains under-recognized or
unrecognized among other areas of health care professionals and policy makers (Sessle, 2011).
Luckily, Pain Medicine is now acknowledged in Canada as a Royal College subspecialty as
346
stated earlier, with the first trainees having started training in 2015 (MOHLTC symposium
presentation, Canadian Pain Society, Vancouver, May 25, 2016). There are several local,
national and international guidelines, on opioid management, interventions etc. that aim to
improve pain management practices (Furlan, 2010; Chou, 2009; IASP, 2009). Pain specialists
have important roles in the implementation and dissemination of these guidelines. The evolution
of pain medicine has encountered many barriers that hinder its progress.
Barriers to Chronic Non-Cancer Pain Services
Many systemic factors contribute to the global burden of unrelieved pain. Many of them
have been identified in the Toronto, Canada and prevalent in other global cities (Boulanger,
2007; Phillips, 2008b; Lakha, 2016). These systematic factors generally relate to the
characteristics of the healthcare system, professionals, and patients. Many factors contribute to
effective pain management, such as myths and misconceptions about opioid use and addiction,
unequal access and inadequate healthcare for the poor, regulatory barriers, and ineffective
education of healthcare practitioners. There is a vast disparity in pain care with older adults,
women, and people with limited fluency in English, lacking private insurance, and those that are
ethnically diverse (Cleeland, 1994; Breitbart, 1996; Unruh, 1996; Bonham, 2001; Hoffmann,
2001; Dannemiller Memorial Educational Foundation, 2004;). A recent report of the
Government of Ontario, highlights a shortage of resources for CNCP management. In Toronto,
patients with chronic pain face an inequitable geographical access to pain clinics, and lack of
program monitoring and services (ECHO, 2014).
347
Additionally, there is very little chronic pain education in Canadian medical schools and
there have been no formal training or certification for pain experts in Canada. Remarkably, on
average, in medical and dental programs for example, less than 16 hours of education are
devoted to pain and its management throughout the years of study, with veterinary students
getting five times more training in pain than medical students (Dubin, 2015). Pain research is
under-funded with only 0.25% of total funding for health research going to pain related studies.
A Way Forward:
The past several decades have seen some considerable advances in our understanding and
management of pain; however CNCP in particular, remains a problem of epidemic proportions in
many global cities including Toronto. It appears that this new understanding of chronic pain has
not yet been translated into standard practices across the health care system. Several
opportunities and approaches to enhance pain understanding and management have been
identified (CPSO 2000, Furlan 2010, Anesthesiology, 2010). There are several guidelines
published by international associations for the delivery and management of chronic pain.
(Human right watch, 2009; IASP, 2009; Practice guidelines for chronic pain management:
ASRAPM, 2010; Ayad AE, 2011). Based on an analysis of submissions from 19 member
countries and on feedback from IASP chapters, IASP recommends strategies that address
barriers to improvement of CNCP management. In conjunction with the Declaration of Montréal
it was concluded that pain management is a fundamental human right (IASP 2010, 2011).These
following recommendations can serve as a path for clinicians, educators, administrators, and
governmental or professional organizations involved in the establishment and maintenance of
standards for pain treatment services in Toronto.
348
Key recommendations:
“Access to pain education for health professionals and the general population
Coordination of the care system to ensure timely access to the right support
A quality improvement program to address access and standards of care
A reasonable proportion of direct and dedicated funding for pain research” (IASP,
2011a)
Critical factors for success:
“Gathering of evidence on the burden of pain to the nation
Gathering of information on access to care
Development of government policy on pain services
Formation of a broad coalition of stakeholders
A clear plan with timescales to achieve strategic action” (IASP, 2011a)
These existing guidelines assist to track and trace delivery of health services for pain
management in a cost effective manner, and can be modified and adapted to the needs and
constraints of the Toronto health system.
Conclusion:
The epidemic resulting from the limited awareness of pain, its complexity, its prevalence,
financial burden, and the limited education that most health care professionals receive about
pain, is further complicated by inability of patients’ access to pain management services. Access
to pain management has been recognized by several international organizations as a basic human
right, reiterated at the international Pain Summit in Montreal. Surveys in pain management in
349
several countries, including one conducted by the Canadian Pain Society, have revealed many
inadequacies in pain management and services. Untreated or poorly treated CNCP exerts a heavy
toll on the pain sufferer, the city’s economy and the health care system in global cities including
Toronto. Evidence suggests that these burdens can be considerable reduced when appropriate
information and resources are put into place. These need to be implemented more expeditiously.
A locally adapted approach to pain management is needed to accelerate the benefits for improved
health, and strengthening Toronto’s health care system for the delivery of chronic pain
management.
350
Appendix 4
SEARCH STRATEGY
MEDLINE (OVID) (1956 to 2014), EMBASE, CINAHL, and PsychINFO, (1974
to 2014)
Searches Results
1
[Collaborative effort by Cochrane Groups, the WHO Library and volunteers outside
the Cochrane Collaboration, LMIC filter based on the World Bank country list
(UMICs, LMICs, LICs per April 2008) has been developed, but not yet tested for its
sensitivity and precision. January 9, 2010]
2 Developing Countries/
3 Medically Underserved Area/
4 Africa/ or "Africa South of the Sahara"/ or Asia/ or South America/ or Latin America/
or Central America/
5 (Africa or Asia or South America or Latin America or Central America).tw.
6
(American Samoa or Argentina or Belize or Botswana or Brazil or Bulgaria or Chile
or Comoros or Costa Rica or Croatia or Dominica or Equatorial Guinea or Gabon or
Grenada or Hungary or Kazakhstan or Latvia or Lebanon or Libya or Lithuania or
Malaysia or Mauritius or Mexico or Micronesia or Montenegro or Oman or Palau or
Panama or Poland or Romania or Russia or Seychelles or Slovakia or South Africa or
"Saint Kitts and Nevis" or Saint Lucia or "Saint Vincent and the Grenadines" or
Turkey or Uruguay or Venezuela or Yugoslavia).mp. or Guinea.tw. or Libia.tw. or
libyan.tw. or Mayotte.tw. or Northern Mariana Islands.tw. or Russian Federation.tw.
or Samoa.tw. or Serbia.tw. or Slovak Republic.tw. or "St Kitts and Nevis".tw. or St
Lucia.tw. or "St Vincent and the Grenadines".tw.
7
(Albania or Algeria or Angola or Armenia or Azerbaijan or Belarus or Bhutan or
Bolivia or "Bosnia and Herzegovina" or Cameroon or China or Colombia or Congo
or Cuba or Djibouti or Dominican Republic or Ecuador or Egypt or El Salvador or
Fiji or "Georgia (Republic)" or Guam or Guatemala or Guyana or Honduras or Indian
Ocean Islands or Indonesia or Iran or Iraq or Jamaica or Jordan or Lesotho or
"Macedonia (Republic)" or Marshall Islands or Micronesia or Middle East or
Moldova or Morocco or Namibia or Nicaragua or Paraguay or Peru or Philippines or
Samoa or Sri Lanka or Suriname or Swaziland or Syria or Thailand or Tonga or
Tunisia or Turkmenistan or Ukraine or Vanuatu).mp. or Bosnia.tw. or Cape Verde.tw.
or Gaza.tw. or Georgia.tw. or Kiribati.tw. or Macedonia.tw. or Maldives.tw. or
Marshall Islands.tw. or Palestine.tw. or Syrian Arab Republic.tw. or West Bank.tw.
351
8
(Afghanistan or Bangladesh or Benin or Burkina Faso or Burundi or Cambodia or
Central African Republic or Chad or Comoros or "Democratic Republic of the
Congo" or Cote d'Ivoire or Eritrea or Ethiopia or Gambia or Ghana or Guinea or
Guinea-Bissau or Haiti or India or Kenya or Korea or Kyrgyzstan or Laos or Liberia
or Madagascar or Malawi or Mali or Mauritania or Melanesia or Mongolia or
Mozambique or Myanmar or Nepal or Niger or Nigeria or Pakistan or Papua New
Guinea or Rwanda or Senegal or Sierra Leone or Somalia or Sudan or Tajikistan or
Tanzania or East Timor or Togo or Uganda or Uzbekistan or Vietnam or Yemen or
Zambia or Zimbabwe).mp. or Burma.tw. or Congo.tw. or Kyrgyz.tw. or Lao.tw. or
North Korea.tw. or Salomon Islands.tw. or Sao Tome.tw. or Timor.tw. or Viet Nam.tw.
9 ((rural or remote or nonmetropolitan or underserved or under served or deprived or
shortage) adj (communit$ or count$ or area? or region? or province? or district?)).tw.
10
((developing or less$ developed or third world or under developed or poor$) adj
(communit$ or count$ or district? or state? or province? or jurisdiction? or nation? or
region? or area? or territor$)).tw.
11
((middle income or low income or underserved or shortage) adj (communit$ or
count$ or district? or state? or province? or jurisdiction? or nation? or region? or
area? or territor$)).tw.
12 (lmic or lmics).tw.
13 (underdeveloped adj2 countr*).mp.
14 (underdeveloped adj2 nation?).mp.
15 (low income adj2 countr*).mp.
16 (low income adj2 nation?).mp.
17 or/2-16
18 exp North America/
19 exp Europe/
20 exp Japan/
21 exp Australia/
22 exp New Zealand/
352
23 developed countr???.tw.
24 advanced countr???.tw.
25 global north countr???.tw.
26 postindustrial* countr???.tw.
27 first world countr???.tw.
28 post-industrial* countr???.tw.
29 industriali#ed countr???.tw.
30 or/18-29
31 Chronic Pain/
32 exp Chronic Disease/ and exp Pain/
33 exp pain management/ and chronic*.tw.
34 Pain Measurement/ and chronic*.tw.
35 ((noncancer* adj2 pain?) and chronic*).tw.
36 ((non-cancer* adj2 pain?) and chronic*).tw.
37
Neuropathic pain.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
38
Nociceptive pain.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
39
Mechanical back pain.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
40
Spinal stenosis.mp. [mp=title, abstract, original title, name of substance word, subject
heading word, protocol supplementary concept, rare disease supplementary concept,
unique identifier]
353
41
Joint Osteoarthritis.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
42
Inflammatory arthropathies.mp. [mp=title, abstract, original title, name of substance
word, subject heading word, protocol supplementary concept, rare disease
supplementary concept, unique identifier]
43
Regional myofascial pain.mp. [mp=title, abstract, original title, name of substance
word, subject heading word, protocol supplementary concept, rare disease
supplementary concept, unique identifier]
44
Chest wall pain.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
45
Migraines.mp. [mp=title, abstract, original title, name of substance word, subject
heading word, protocol supplementary concept, rare disease supplementary concept,
unique identifier]
46
Visceral pain.mp. [mp=title, abstract, original title, name of substance word, subject
heading word, protocol supplementary concept, rare disease supplementary concept,
unique identifier]
47
Chronic Pelvic Pain.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
48
Pain post cholectomy.mp. [mp=title, abstract, original title, name of substance word,
subject heading word, protocol supplementary concept, rare disease supplementary
concept, unique identifier]
49 or/31-48
50 exp "health care facilities, manpower, and services"/
51 17 and 49 and 50 [LMIC and CPain and Health Service/Facilities]
52 30 and 49 and 50 [Developed and CPain and Health Service/Facilities]
53 limit 52 to (english language and humans)
54 remove duplicates from 53
354
Appendix 5
May 27, 2013– (For all three settings)
Cover Letter to Pain Physicians (In charge of Pain clinic) by Collaborators and consent
form
SUBJECT: Participation in a key informant survey and interview
Research Study “Services for management of chronic non cancer pain (CNCP) in global
cities: Eastern Mediterranean Region.”
To Whom It May Concern:
I am writing to request your participation in a research study designed to help a
team of researchers to better understand the structure and process of clinical services
for chronic pain management globally with a particular focus on three global cities
(Kuwait, Karachi and Toronto). The study aims to learn about the structure and process
of pain services available in these regions directly from those involved. You have been
identified as someone involved in the delivery of such services. You may be a pain
management clinical practitioner in charge of the delivery of those services or one of
his/her close collaborators, for example responsible for management of the facilities
and/or employees that enable delivery of such services or provide ancillary clinical
services. The team’s research strategy is to survey chronic pain management
professionals and those who support them in order to document local knowledge and
experience. Our goal is to draw a narrative picture of the pain management landscape
in the global city locations studied.
This study will form the core of a PhD thesis project being carried out by Ms S.
Fatima Lakha who is registered in the PhD program of the Institute of Medical Sciences
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at the University of Toronto. Our initial focus is on chronic pain management services in
Canada and in the WHO Eastern Mediterranean region. The initial three cities studied
are Kuwait City, Karachi and Toronto reflecting the home cities of initial partners in this
study. In Kuwait, our partner is Dr. Hanan Badr of the Faculty of Medicine, Kuwait
University/ Ministry of Health, Kuwait and in Pakistan, Dr. Mubina Agboatwalla of the
Department of Community Health Sciences (CHS), Agha Khan University Hospital,
Karachi, Pakistan.
All participation in this study is voluntary and you may withdraw from the study at
any time. Your participation consists of completing a structured interview. This should
take no more than 45 minutes. There is no monetary or non- monetary compensation
for participants. Should you agree that interview will be scheduled according to your
availability and will be conducted at your office for convenience. A digital audio recording
of the interview will be made in order to transcribe later and analyze it for general
themes. Although we would prefer to carry out the interview in person, it may also be
convenient for you to participate by conference call. You will be provided with a copy of
all questions to be asked before the interview. Most will be aimed at quantifying
resources. But, many will also be open-ended exploring qualitative aspects of the local
context.
We plan to interview enough participants, so that your anonymity can be
protected. The interview procedure and goals have been reviewed by the University of
Toronto Research Ethics Board You have the right to contact the Office of Research
Ethics at [email protected] or 416-946-3273, if you have questions about
your rights as a participant. Confidentiality and privacy will be protected by removing
names and identifying data from any extract of transcripts used for publication. All
transcripts will be stored electronically in a secure location on University of Toronto
property. No data from this survey will be shared directly with any commercial
organizations.
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It is our intention to use this information to develop research publications that
suggest how access to chronic pain management can be enhanced globally. The results
will also inform development of continuing education programs to advance that goal.
You will be informed of all publications and programs developed as a result of this study.
If you would like to learn more about this study please contact me:
[email protected] or my supervisors and collaborators.
Telephone: 416-603-5380
Fax: 416-603-5725
Sincerely
S.Fatima Lakha (PhD Candidate)
Dr Angela Mailis-Gagnon (Co-Supervisor, email: [email protected])
Dr. Peter Pennefather, (Co-Supervisor, email: [email protected])
Institute of Medical Science, University of Toronto, Toronto, CANADA
Collaborators
Dr Hanan Badr (Faculty of Medicine, Kuwait University/ Ministry of Health, Kuwait,
email: [email protected]),
Dr Mubina Agboatwalla (Department of Community Health Sciences (CHS), Agha Khan
University Hospital, Karachi, Pakistan, email: [email protected])
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INFORMED CONSENT FORM
(City, Name of Country)
QUESTIONNAIRE ON SERVICES FOR MANAGEMENT OF CHRONIC PAIN (CP) IN
GLOBAL CITIES
Preamble. As explained in the accompanying recruitment letter, we are conducting a
structured interview on services for management of chronic pain (CP) in global cities.
Your voluntary participation is requested, so that we may learn more about the structure
and process of clinical services for chronic pain management available in your city. Our
questionnaire will take approximately 45 minutes. Your name and institutions will not be
recorded on the questionnaire and your responses will be anonymous. Your
participation is voluntary and you may choose to withdraw from the interview/survey
process any time after signing the consent. However, after completing the interview
process you will not be able to delete your contribution. If you are willing to participate
subject to those conditions, please sign this form.
If you have any questions pertaining to this study, please contact Ms S.Fatima
Lakha at [email protected] or 416-603-5380.
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To Whom it May Concern
This study has been explained to me and any questions I had have been answered. I
know that I may withdraw from the interview process at any time. I agree to take part in
this study and again to be contacted at a later time, if additional follow-on information is
needed. My signature below confirms my personal agreement of my voluntary
participation in this important study.
Participant Name Signature
_________________________ _______________________
City of study: Kuwait Karachi Toronto
Date
___________________
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Appendix 6
QUESTIONNAIRE
Services for management of chronic pain (CP) in global cities: Eastern Mediterranean
Region of the World Health Organization and Canada.
This survey is designed to help a team of health system researchers to better understand the
structure and process of clinical services for chronic pain management globally with a particular
focus on facilities and services available in global cities. The study aims to learn about clinical
pain management facilities and services available in those locations directly from clinical leaders
involved in their operations. You have been identified as being directly engaged or otherwise
affiliated with the delivery of clinical pain management services. Our goal is to draw a narrative
picture of the pain management landscape in the global city locations studied. For this phase of
the study we are studying practices in Toronto Canada, Kuwait City Kuwait, and Karachi,
Pakistan. We appreciate very much your collaboration.
Please be aware that completing this survey serves as a confirmation of your consent to
participate in the study recorded in the consent letter signed previously.
This survey will have two parts. The first will simply record factual information about
yourself and your clinic. The second will delve more deeply into your perceptions of how
the clinic structured and runs and the expected benefits that its services provide for
patients and the health systems that they are in.
The results of this survey will be made anonymous and no results will be linked to you
personally as a participant. However, after completion of this survey your anonymized
data cannot be removed from the project data base.
Your involvement with clinical pain management may involve practices at multiple locations. If
this is the case please provide us with a list those locations. We are particularly interested in
services aimed at assisting in the management of chronic pain which is defined as ‘moderate to
severe pain of a continuous or recurrent nature lasting more than 3-6 months’. For the purposes
of this survey a pain management clinic is defined as a health care facility staffed with trained
professionals who are specialized in the diagnosis and management of patients living with pain.
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To be included in the study, the pain clinic must offer specialized clinical services for the
diagnosis and management of patients with chronic pain. It must be officially registered as an
independent pain management unit, or a division of a larger registered organization that offers
such services. These unit and institutions may be private and accountable primarily to businesses
or non-governmental organizations backers, or public and accountable to the state through
government agencies. It may be an academic unit which participates actively in training of health
professionals or a non-academic unit that does not participate in training programs. It may be not
for profit, where budget and fees governing clinical services are determined by needs of the
community served by the organization with short falls covered by donations and grants, or for
profit where budget and fees determined by opportunity costs and return on investment
incentives.
PART I: Background Information
A. The Clinic. This section of the survey aims to characterize the nature of the pain clinics that
you are affiliated with, their setting and associated resources and services provided with respect
to treatment of: acute pain, chronic non-cancer pain, chronic cancer pain and chronic pediatrics
pain. Staff at each clinic specified should have been involved in the delivery of clinical services
identified in the last 6 month.
Clinic Code: Participant code + telephone area code of clinic:
Location 1; ( ) Private ( ) Public
Name of institution Establishment date
Location 2; Name of institution ( ) Private ( ) Public
Name of institution Establishment date
Location 3; Name of institution ( ) Private ( ) Public
Name of institution Establishment date
Infrastructure- Facilities: Location 1 □; Location 2 □; Location 3 □
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B. The Clinic Director
Personal Information
Gender □ Male □ Female
Age groups:
<25; 26-35; 36-45; 46-55; 56-65 66-75; >75 years
□ □ □ □ □ □ □
How many years has the director been practicing any form of clinical pain
management:
< 5; 5-15; 15-25; 25-35; > 35 years
□ □ □ □ □
IV. Have you been involved in chronic pain management in the last 6 month?
No □ ; Yes □ If Yes go to V
V. What forms of chronic pain management have you been engaged in the last 2 years
General chronic pain Cancer pain Pediatric Pain
□ □ □
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VI. List relevant health professional degrees and specialty training (note specialty
training includes residency, fellowship/specialty, and continuing medical education)
1) Degree or specialty training/date completed/Country
_______________________/__________________/____________________
2) Degree or specialty training/date completed/Country
______________________/__________________/____________________
3) Degree or specialty training /date completed/Country
_____________________/__________________/____________________
4) Degree or specialty training /date completed/Country
_____________________/__________________/____________________
Write in as many as deemed relevant on back of this sheet
VII Other relevant information
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PART II: PAIN MANAGEMENT LOGISTICS
(A) STRUCTURE: Can you tell me about the description of your pain program
Governance and Infrastructure (include manpower in FTE equivalents MDs, their
specialties space): Interdisciplinary team/ Multi-disciplinary team : Funding Sources: Affiliations / collaborations: Facilities and Equipment
(B) CLINICAL SERVICES: Can you tell me about the delivery of clinical services
Types / yearly volumes of services:
Referral process: comprehensive Follow-up process: Waiting lists: Regular meetings with staff: Yes/No; Frequency: daily/weekly/monthly Fees, if any: What kinds of treatment modalities does your Pain Program offer?
A. – Pharmacology management (Mark all that apply ) ( ) Non-Steroidal Anti-inflammatory Drugs (NSAIDS); ( ) Simple Analgesics; ( ) Muscle
relaxants; ( ) Opioids; ( ) Anti convulsants; ( ) Anti-depressants
( ) Others: _________________________________________________________
B. – Procedures (Mark all that apply ) ( ) Epidural injections; ( ) Stellate ganglion block; ( ) Trigger point injections; ( ) IV regional
blockade; ( ) Caudal block ; ( ) Lumbar sympathetic block; ( ) Spinal Stimulators
( ) Others:_____________________________________________________
C. – Psychological training Support therapy( ), Cognitive behavioral therapy (CBT)( ), Biofeedback( ), Self-hypnosis( ),
Mindfulness based stress reduction( ), Other:________
D. – Physical medicine and rehabilitation Physical therapy( ), Occupational therapy( ), Vocational counseling( ), Other:___________
E. - Complementary and alternative medicine Chiropractic( ), Herbalism( ), Meditation( ), Massage therapy( ), Yoga( ), Acupuncture( ),
Other: ____________
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F. - Does your Pain Program have a particular expertise in some area of pain treatment?
( ) Yes ( ) No
Please specify........................................................................................................................
(C) RESEARCH: Can you tell me about the research activities
Type of research performed:
Publications (for example cite number since inception or yearly output); grants (number
of grants or yearly funding or some other indicator of your choice: Trainees and sources of funding:
(D) EDUCATIONAL : Can you tell me about the education activities
Rounds at your program:
Other Activities : Protocol or Guidelines Organization of CME events or any other educational output:
(E) STRENGTHS
Comments:
(F) BARRIERS
What are the 3 principal barriers for you in the pain program?
1)
2)
3)
Comments:
(G) ANY OTHER INFORMATION THAT MIGHT BE RELEVANT Comments:
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PART III:
What barriers/ difficulties you have in managing CNCP? Rate the intensity of the barriers
(0 being not a barrier and ++++ as an extreme barrier) MARK ALL THOSE THAT APPLY
Clinical Services/ Practices 0 ++ +++ ++++
Coordination of care, particularly during transition from acute to chronic
Patient and family fear that reporting pain will exclude patient from clinical
trials or treatment
Patients’ reluctance to take opioids
Legal and regulatory sanctions for opioid use
Inadequate reimbursement for providers
Patient and family failure to mention pain to providers
Religious Barrier (e.g. Male physicians cannot see female patients etc.)
Cultural Barrier for pain medications
Cultural Barriers (e.g. Male patients do not complain as they think pain is
sign of weakness)
Religious Barriers (e.g. Male physicians cannot see female patients etc.)
Physicians’ reluctance to prescribe opioids
Patient’s fear drugs will lose their effectiveness
Patient adherence to treatment regimens
Lack of awareness among patients and families about presence of pain clinic
Cognitive impairment hindering assessment
Infrastructure 0 ++ +++ ++++
Psychological and social support services
Lack of access to interventions (blocks, spinal stimulators etc.)
Lack of time and resources to address non-cancer pain
Access to assessment of patients with chronic non-cancer pain
Clinic too far or inconvenient for patient to travel to
High cost of medications and treatments
Lack of access to wide range neuropathic adjuvant medications (e.g.
Gabapentin, pregabalin, duloxetine)
Access to wide range of opioids
Excessive regulation of opioids in Narcotics Bureau, Department of Health
Excessive regulation of opioids in pharmacy
Waiting list to see physicians/ specialists
Regulatory barriers to effective pain management
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Education 0 ++ +++ ++++ Inadequate non- cancer pain management training and
education
A priority on curing non-cancer pain over managing
Awareness of other physicians about pain clinic benefits for
referral purposes
Knowledge about available resources
Inadequate staff knowledge of pain management
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Appendix 7
Toronto Ethics Approval
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Appendix 8
Kuwait Ethics Approval
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Appendix 9
Karachi Ethics Approval