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OBJECTIVE BASED EVALUATION OF “CAMP APPROACH” - RECONSTRUCTIVE
SURGERY OF LEPROSY PERSONS IN VADODARA DISTRICT
Dr. P.V. DAVE
DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENT FOR THE AWARD OF THE DEGREE OF
MASTER OF PUBLIC HEALTH
ACHUTHA MENON CENTRE FOR HEALTH SCIENCES STUDIES Sree Chitra Tirunal Institute of Medical Sciences and Technology
Thiruvananthapuram, Kerala (India)
JUNE 2004
DEDICATED
To my dear Mother Late Mrs. Madhukanta V. Dave
And
To loving memory of my father
Late Shri. Vamanrao Dave
Certificate
Certified that this dissertation entitled “OBJECTIVE BASED
EVALUATION OF “CAMP APPROACH” - RECONSTRUCTIVE
SURGERY OF LEPROSY PERSONS IN VADODARA DISTRICT”, is a
record of bonafied original research work undertaken by
Dr. PARESH V. DAVE, in partial fulfillment of the requirements for the
award of the Degree of Master of Public Health under my guidance and
supervision.
Guide Thiruvananthapuram Dr. D. VARATHARAJAN June, 2004 Associate Professor Achutha Menon Centre for Health
Science Studies Sree Chitra Tirunal Institute of
Medical Science and Technology Thiruvananthapuram, Kerala
ACKNOWLEDGEMENTS
Leprosy, being one of the most stigmatized diseases, has not been the major thrust of
research among medical professionals. Being a little trodden field of study, I took this
challenging topic for my dissertation work in Master of Public Health Course. Experience
gained during last ten years in this field was another factor in choosing this topic.
I feel my duty to pay my sincere regards and gratitude to Mr. Ashok Bhatt, Who is the
pioneer of the concept, “camp approach reconstructive surgery” for social and economic
upliftment of leprosy affected persons of Gujarat. I also sincerely thankful to Dr. Kamal
Pathak, Dean Medical College, Vadodara, who make lot of efforts for success of this
concept. I also appreciate the dedicated work of Dr. Yogesh Bhatt, Plastic Surgeon,
S.S.G. Hospital, Vadodara.
I feel my duty to pay my sincere regards and gratitude to the Secretary (Health),
Government of Gujarat, Commissioner Health, Additional Director of Health for sending
my nomination for this course. I am also very thankful and extending my gratitude to
Ministry of Health and family welfare, Government of India for approval of my
nomination and to World Health Organization in India for awarding me in-country
fellowship for this course.
I am thankful to Dr. K. Mohandas, Director, Sree Chitra Tirunal Institute of Medical
Sciences and Technology for Patronizing all of us during the entire course. I am grateful
to Dr. K.R. Thankappan, Head of Department, Achuta Menon Center for Health Science
Studies, for his ever-available support and instilling the basics of research process.
I am extremely thankful and extending my sincere gratitude to Dr. D. Varatharajan. As
my Guide, he always encouraged me to do better and took immense efforts in shaping my
study. All credits to his brotherly attitude so that I could complete the study without much
problems. I am thankful to Dr. P.S. Sarma, as Co-ordinator he gave all support during the
course. I also got valuable suggestions in the analysis part of the study from him. I extend
my sincere gratitude to all my batch mates who always encouraged and gave all supports
during last one and half year, specially during proposal submission and in analysis part of
the study.
I am also very much grateful to Dr. W H Van Brakel, for giving me inspiration and allow
me to use GPAS Scale 1998 and also Participation scale which is developed by him and
his team at Nepal. I also like to give my sincere thanks to Dr. Vasudev Rawal, Director of
State Institute of Health and Family welfare, Gujarat.
I am very greatful to all my team members who helped me for data collection, Dr.
Agrawal DLO, Dr. Nilesh MO, Dr. D.R. Shah MO., Sunita and Nandevalia
Physiotherapists, Atul Pharmacist and German Leprosy Relief Association for whole
hearted support.
I am extremely thankful and extending my sincere gratitude to Dr. R. Ganapati, Director,
Bombay Leprosy Project, Mr. Kingsly, Physiotherapist, and Mr. Kailash Assistant
Professor, Sion Medical College, who took immense effort during my thesis work.
Finally I am indebted to all members of my family, specially my wife, Ms. Divya Dave
and my children Ravi and Bhakti who took all responsibilities and pains at home, in my
absence. Their love and affection constantly inspired me in completing the course and
this study.
Dr. PARESH V. DAVE
DECLARATION
I hereby declare that the work embodied in this dissertation entitled
“OBJECTIVE BASED EVALUATION OF “CAMP APPROACH” -
RECONSTRUCTIVE SURGERY OF LEPROSY PERSONS IN VADODARA
DISTRICT”, is the result of original research and has not been submitted for any degree
in other university or institution.
Thiruvananthapuram June, 2004 Dr. Dave Paresh Vamanrao
Abstract
Leprosy is one of the oldest scourges of mankind. The goal of eradication of leprosy will
have little meaning unless the issue of disability is address, as the persons affected with a
leprosy deformity would bear the “Disease” identity in the society. Disability is an
umbrella term for impairment, activity limitation or participation restriction recognized in
the ICF 2001, WHO.
Objective
This study attempted to findout the functional improvement, improvement in social
participation and evaluate the economic improvement after reconstructive surgery in
leprosy affected persons in “Camp approach”, Vadodara, Gujarat.
Methodology
In cross sectional descriptive study, total of 279 leprosy affected persons who underwent
major reconstructive surgeries were interviewed in the process using interview schedules
during 1st January to 30th March 2004. EHF Score, GPAS Scale (1998), Participation
Scale were used as instruments.
Results
Result indicates 13.2 times more surgery in camp approach as against traditional routine
surgery, 50.2% subjects fell in productive age group. For structural improvement, 22.6%
reduction in EHF score after surgery. Functionally 45.5% patients improved in the
activity of preparing meals, measured through GPAS Scale. Though, restriction in social
participation was not much a problem, however surgery did contribute to 41%
improvement. Economically 14.3% reported an increase in income after the surgery.
While deformity pushed 25.5% persons down in the income group.
Conclusion
“The camp approach” reconstructive surgery for leprosy affected persons with deformity
had shown improvement in structural, functional, social and economical. This model
benefited leprosy affected persons to integrate their life in the normal way in the society.
Though economic cost is more, social cost out weights the economic cost involved.
CONTENT
Chapters Page No. CHAPTER – 1 INTRODUCTION
• The disease
• Control Strategy
• Indian Context
• The Study
• Objectives CHAPTER – 2 CONCEPT AND METHODOLOGY
• Conceptual Frame Work
• Methodology CHAPTER – 3 RESULT AND ANALYSIS
• General Charactoristics
• Structural Improvement
• Functional Improvement
• Social Participation
• Economic Improvement CHAPTER – 4 DISCUSSION AND CONCLUSION
• Discussion
• Conclusion
• Policy Framework
• Strengths and Limitations REFERENCES ANNEXURE
• Interview Schedule
• Operational Definitions
• Extra Tables
• Photographs
1
1 INTRODUCTION
1.1 THE DISEASE
Leprosy is a chronic infectious disease caused by Mycobacterium Leprae, an acid-fast,
road-shaped bacillus. It mainly affects the skin, peripheral nerves, mucosa of the upper
respiratory tract and eyes, apart from some other structures. It is one of the diseases
feared over the centuries because of its potential to cause progressive disfigurement,
disabilities and mutilations. The stigma attached to leprosy has often led to ostracization
of those afflicted, and their families, by society.
It has two types, paucibacillary (PB) and multibacillary (MB) and can affect all ages and
both sexes. The incubation period can be several years but is usually 3-5 years. It is
transmitted directly from person to person through the respiratory tract or the skin.
However, it is acquired through prolonged exposure and only a small proportion of the
population is affected. Untreated persons, particularly those, who are smear positive, are
the principal source of infection. 1
Deformities and disabilities can be primary (i.e. due to the disease process) or secondary
(due to damage to anaesthetised body parts). They are more commonly seen in Borderline
Leprosy and when the disease has been present for a long time. It is more commonly seen
in 20-50 age group and more so in males especially manual labourers. Anaesthesia
resulting from sensory loss makes it susceptible to ulceration on hands and feet, corneal
ulcers and opacities. The motor affection leads to Claw hand and Foot drop, etc. Lack of
sweating and sebum is seen due to loss of autonomic function thus leading to a dry,
cracked, scaly skin, which tends to ulcerate2. It is found that a majority of new cases had
at least one thickened nerve, with ulnar nerve most commonly involved3
2
1.1.1 Ancient history
Leprosy (Greek – Leper – Scaly) is a chronic, infectious, non-fatal disease associated
with distressing deformities and disabilities leading to physical incapacitation, mental
agony and social ostracism. The disease has a long history and the ancient literature of
Rigveda recorded management of leprosy 12,000 years backI. It probably originated from
ancient India and was known as kushtha, derived from the Sanskrit word kushnati
meaning eating away. Evidence of bone involvement has been documented in the
Egyptian Mummies of the 2nd Century B.C. It was postulated then that soldiers of
Alexander and Prompey returning from India and Egypt respectively introduced the
disease to Europe.
1.2 CONTROL STRATEGY
2
For many years there was no effective remedy, except chaulmoogra (Hydenocarpus) oil,
which had till recently been the mainstay for treatment of leprosy5. Introduction of
sulphone drugs in the treatment of leprosy in 1943 marked the beginning of case detection
and domiciliary treatment. The decade of the 1980s witnessed a change in the strategy of
leprosy control from Dapsone monotherapy to Multi-Drug Therapy (MDT) and for the
first time, the concept of cure in leprosy emerged. With the remarkable success of MDT,
World Health Organization (WHO) announced global elimination of leprosyII. The
strategy was to treat leprosy with MDT and detect the cases early. The requirement of
skin smear examination is not mandatory to initiate MDT7
I Ghosha, daughter of sage Kakshivat, a direct descendent of Maharshi Atri, was afflicted by Abhishasti, which Sayanachary thought to be leprosy. As she was not getting proper match, though becoming of age, she fervently prayed to Ashvinikumaras who are doctors to gods. (Rigveda-Mandal 10, Sukta 39 & 40)4
. Reduction of prevalence to
II Reducing leprosy prevalence to less than one case per 10,000 populations, by the end of year 20006
3
very low level, it was hoped, would lead to interruption of transmission of infection and
reduce disease incidence to insignificant level.
The treatment and its duration are fixed according to the type of leprosy. For PB cases
(number of lesions < 5), MDT with rifampicin and dapsone is given for 6 months while in
the case of MB (number of lesions >5), MDT with rifampicin, dapsone and clofazimine is
given for 12 months.6 Erethema Nodosum Leprosum (ENL), type-2 leprosy reactions are
an important complication of multibacillary leprosy, although its incidence (5.3%) has
reduced after the introduction of MDT. The incidence is found to be maximal in the 2nd
and 3rd year after the start of the treatment8
• All registered cases receive MDT now,
. By the end of 1998, MDT cured about 10
million cases; other achievements of MDT strategy are
• Relapse rate (1 per 1,000 cases) is brought down to very low level
• No resistance to MDT has been reported. The overall prevalence has been
reduced by more than 90% and number of countries showing prevalence rate
above 1 per 10,000 populations is reduced from122 in 1985 to 17 in 2003.
1.2.1 Progress made so far
7,9
The WHO has announced in May 2001 that the goal of leprosy elimination i.e. reducing
leprosy prevalence to less than one case per 10,000 population by the end of 2000 had
been attained. At the global level when prevalence of leprosy was 0.84/10,000 with total
number of cases 523,605 and total new cases detected during 2002 were 612,111 with
NCDR 0.98/10000.9 Of the 523,605 registered cases, 76.4% are in Asia, 8.6% are in
Africa and the remaining 15% in other continents. Two countries, India & Brazil account
for nearly 80% of the global burden of leprosy.
4
Although the strategy attained leprosy elimination at global level by the year 2000, 17
countries including India had an average prevalence rate of much more than the target
elimination level in April 2003. These countries can be broadly grouped into those with
large populations and a large number of cases (major endemic countries) and countries
with smaller populations and a small number of cases (minor endemic countries).
‘Endemic’ refers to prevalence above 1 per 10,000 population. 9
Other countries (over 100) have eliminated leprosy as a public health problem and have
prevalence levels of less than 1 per 10,000 population. They still contribute to a certain
number of cases in the world. The number of registered cases in such countries at the
beginning of 2003 was 65,778 (12.6% of the global total); the number of new cases in
these countries during 2002 was 52,965 (8.6% of the global total). While prevalence
declined after the introduction of MDT, last 15 years data do not indicate any immediate
effect on transmission and persons already infected are likely to develop leprosy lesions
for some years10. WHO has consequently set a new target, the year 2005 for leprosy
elimination at the national level everywhere9
1.2.2 Prevention and management of disability as a core strategy
. According to this strategy, endemic
countries are provided with simplified guidelines for case management, training to
strengthen local management capacity, free supply of MDT blister packs, financial and
technical support from leprosy elimination campaign, and special action project for
elimination of leprosy (SAPEL).
Leprosy often causes impairment of autonomic, sensory and motor nerve function11,12
This in turn leads to secondary impairments or deformities of the eyes, face, hands and
feet13,14. Too often these become irreversible before the affected person receives
appropriate treatment. Impairments and deformities may cause limitation of activities of
5
daily living and adverse social reactions.15 The core strategy for elimination now includes
the prevention of disability because community still perceives leprosy as the disease that
produces deformities and disfigurement. Enhancement of their knowledge in respect of
“leprosy can now be cured without deformities” with timely initiated and regular duration
therapy is also essential. Similarly, prevention of disability through health education,
physiotherapy and physical aids and appliances have been well recognized. Deformities
can be corrected by reconstructive surgery and need not lead to permanent disability.
Rehabilitation is one of the crucial messages to be passed on to the community. Besides,
there are number of cases who have suffered the consequences of leprosy beyond even
the cure by reconstructive surgery or have been the target of the social rejection for whom
rehabilitation is the only answer.
1.3 INDIAN CONTEXT
16
India has the largest number of leprosy cases compared to any country of the world,
accounting to more than two-third of the total world leprosy cases. Although no part of
the country is free from the disease, the prevalence rates vary not only from state to state,
but also between and within districts. Up to 1910, the exact figures about the total number
of cases of leprosy in India are not available. The Indian council of the British Empire
Leprosy relief association (predecessor of the present Hind Kustha Nivaran Sangh)
carried out survey, in the country during 1920-30. It was estimated that the number of
cases in the country would be about I million5. Since then anti-leprosy work has been
intensified especially in the post independence years and particularly after the initiation of
the National Leprosy control Programme in 1955. The estimated number of cases
continued to rise and stood at 3.2.million in 1971. Apart from increase in population, the
main reason for the increase in the estimated number of cases over the years was the
increased activity in the case finding prograrnme17.
6
Since the introduction of MDT in 1981, India has seen a highly significant decrease in the
prevalence from 57 per 10,000 population in March 1981 to 5.2 per 10,000 population in
March 1999; it came down further to 3.2 per 10,000 in 2003. Fifteen Indian States/Union
Territories have attained the level of elimination.9. Despite all efforts; however, new case
detection has not shown a decline over the last 15 years due to presence of hidden and
undiagnosed cases.
Indian States are broadly grouped on the basis of their population size and leprosy
endemicity. The large States are those with populations of over 10 million; small states
have populations of less than 10 million. The high-endemic States are those with
prevalence rates of over 5 per 10,000; medium- endemic States have prevalence rates
between 2 and 5 per 10,000; and low-endemic States have prevalence rates between 1 and
2 per 10,000. 18
States with high endemicity are Bihar, Orissa, Chattisgarh, Jharkhand, Uttar Pradesh
and Delhi, which together account for 62.3% of leprosy cases in India. This means that
nearly half of the world's leprosy patients are in these six states. Bihar has the largest
share of 26%, and highest prevalence of 8.6 and New Case Detection Rate (NCDR) of
10.86 per 10,000 population. 9,19 Chattisgarh has a prevalence of 7.20 and NCDR of 8.59
while Jharkhand reports 6.49 and 10.33 respectively.
States with medium endemicity are Maharashtra, Andhra Pradesh, Tamil Nadu and
West Bengal together making up for 25.2% of cases while States with low endemicity,
Madhya Pradesh, Karnataka and Gujarat, account for 8.7% of cases. Six states
(Rajasthan, Punjab, Haryana, Kerala, Assam and Jammu & Kashmir) currently have
prevalence of less than 1 per 10,000. Among the 16 small States, none have high
endemicity, 4 have medium endemicity, 3 have low endemicity, and 9 have eliminated
9
7
leprosy. Small States with medium or low endemicity together contribute to only 0.7% of
cases.
1.4 LEPROSY SCENARIO IN GUJARAT
18
Gujarat, accorded independent statehood in 1960, is the 7th largest Indian state and 10th
largest in terms of population (50.6 million). Gujarat has three geographical areas - North,
South and Saurashtra–Kutchh. The phased implementation of MDT in Gujarat has led to
a drop in the prevalence rate from 21.1 in 1984-85 to 5.4 in 1990-91 to 1.34 in 2003-04
(Figure-1.1) and there were 7,080 cases in the state at the end of October 2003.
Figure-1.1. Leprosy Prevalence Rate (PR) - Gujarat
1.34
21.1
0.0
5.0
10.0
15.0
20.0
25.0
84-85
86-87
88-89
90-91
92-93
94-95
96-97
98-99
00-01
02-03
Year
Prev
alen
ce R
ate
20
Out of 25 Districts, 9 (in south Gujarat) have leprosy prevalence of more than 1/10,000
and others have eliminated leprosy. Out of 226 Taluks (Sub-districts), 190 have attained
a prevalence of < 1 while 22 have 1-2 and 39 have 2-5; 17 taluks have it above 5.21 There
are 7,385 persons with grade-1III deformity and 5,970 persons with grade-2.
III Grade-1 indicates anaesthesia in the affected part while grade-2 includes all visible deformities.
22
8
1.5 THIS STUDY
The goal of eradication of leprosy will have little meaning unless the issue of disability is
addressed, as the persons affected with leprosy deformity would bear the ‘disease’
identity in the society. The dramatic fall in prevalence and a reduction in the proportion of
new cases with disabilities do not necessarily mean a reduction in the global prevalence
of disabilities23. The question of rehabilitation has become more urgent today because the
future of “leprosy work” is seen to lie in the area of “rehabilitation” in the broad sense of
“solving all leprosy-related, not necessarily medical, problems” rather than in the
traditional areas of case finding, treatment providing and case holding24. It is estimated
that there are about 2 to 3 million individuals with disabilities due to leprosy in India25
Surgical correction is one of the means of rehabilitating the leprosy disabled as well as a
necessary means of preventing the disabilities from further worsening. Physical
disabilities lead to functional, social and economic difficulties. The advent of re-
constructive surgery techniques for correcting the paralytic deformities in leprosy is a step
to overcome the mystery characterized by the process of
.
This is a sizeable mass that should be definitely and successfully rehabilitated in order to
maximize social welfare.
dehabilitationIV
IV The term dehabilitation, used for describing the process of progressive devaluation and social marginalization, was a neologism introduced in leprosy in 1984.26 Persons with disabilities suffer from many disadvantages living in society (like illiteracy, unemployment, physical or economic dependency) restricting their participation as equal members and active citizens. As they are unable to discharge the obligations expected of them and play their normal role in society, their social status goes down and they get left out of decision-making processes within the family and in their neighborhood. Their (normal) multidimensional social identity is reduced to a stereotyped identity based on their disease and deformity. This process of their progressive downgrading and devaluation within their families and societies was termed “dehabilitation” 26.
. Unfortunately
surgical rehabilitation measures have not kept abreast with the day-to-day events that
hinder the leprosy-affected persons. Once the deformities are corrected, the natural
9
sequence towards complete rehabilitation of the affected persons is to find suitable means
of gainful employment and restoration of normal social relationships.
The socio-economic uprooting associated with leprosy is well known. Studies have found
that persons with disability had a higher probability of facing socio-economic problems
compared to those without disability.27,28 While 55-75% of leprosy afflicted persons with
disability reported socio-economic problems, the proportion was 6-39% among those
without disability. Social consequences are mainly through the distancing of the patients
and their families by the community expressed through exclusion at social and religious
functions and gathering, eviction from jobs, work places, businesses, and suspension of
material and familial relationships. The trauma to the patient has immense psychological
and behavioural implications and consequences. It can cause social or antisocial attitudes.
The economic effect is through loss of livelihood and earning capability. Society and
families respect persons who are economically self-reliant. For the leprosy affected,
economic dislocation and marginalization are especially serious deleterious outcomes of
the disease.29 Loss of economic activity seems to be less in agricultural settings compared
to white-collar industrial or urban job settings30
One of the strategies considered by the Government of India (GOI) to reduce disability
load is the ‘camp-based approach’ to reconstructive surgery (Government of India 1997);
other strategies that are being adopted are treatment of acute neuritis with Prednisolone,
splints applications, MCR foot wares and community base rehabilitation.
.
31 On the basis
of guideline for involvement of Non Government Organisation (NGO) for major
reconstructive surgery issued vide latter No. T/1018/16/97/LEP (Part III) dated, 11-11-
1997, GOI issued GO.No.T-11018/1/99-LEP/CCD New Delhi dated, 12-03-1999, for
conducting reconstructive surgery camps under NLEP, through NGO (G.O. Leprosy
Division New Delhi; 1999). Health department of Gujarat Government took advantage of
10
the GOI approach and organized reconstructive surgery camps through NGOs from 1st
January 1999 to 30th April 2004. The overall aim of the reconstructive surgery camps was
to rehabilitate the leprosy-disabled persons functionally, economically and socially.
Nevertheless, while corrective surgery may help in physical, social, economic and
psychological rehabilitation there is no documented proof as to the extent to which this
happens. The proportion of operated patients whose economic conditions have improved
because of corrective surgery is also not known. In fact, published literature is quite silent
on this point.31
1.6 OBJECTIVES
In this context, the present study evaluates the reconstructive surgeries on
leprosy-disabled persons in Gujarat from 3 dimensions – functional, economic and social.
As indicated above, the overall objective of this study is to conduct an objective-based
evaluation of camp-based reconstructive surgery for leprosy afflicted persons in Vadodara
district of Gujarat, India. Specific objectives are
• To assess the functional improvement
• To document improvement in the social participation.
• To evaluate the economic improvement
The basic premise of this study is that reconstructive surgery leads to significant
improvement in functional capabilities, social participation and economic development.
1.7 CHAPTER ORGANIZATION
This dissertation has four chapters. Next chapter introduces the concept and methodology
for the study while the following chapter presents the results. The last chapter is devoted
for discussion, summary and conclusions.
11
2 CONCEPT AND METHODOLOGY
It may be recalled here that the overall aim of this study is to evaluate the functional,
social and economic improvement of leprosy persons who have undergone the
reconstructive surgery through “camp approach”. This chapter is divided into two parts -
part-I explains the concept of “camp approach” while part-II describes the methodology.
Third part providing the operational definition of the variables which is given in
Annexure II.
PART – I: CONCEPTUAL FRAMEWORK
2.1 EVOLUTION OF LEPROSY RE-CONSTRUCTIVE SURGERY IN INDIA
Although the pattern of deformities in leprosy is similar to the deformities due to
peripheral nerve damage caused by diseases other than leprosy, surgical techniques used
to correct the deformities widely differ, as the pathogenesis is different. Search for the
past evidence from the published literature revealed that a few plastic surgeons first
attempted to correct the facial deformities in leprosy. In 1942, Gillies, a renowned Plastic
Surgeon, successfully corrected the depressed nose of a leprosy patient in a Leprosarium
near Sao Paulo in South America. Later, Drs Antia, Bourrel, Carayon, Lennox and Narita
introduced the plastic surgery procedures for correcting the deformities in leprosy.
During 1958 to 1965, several publications on plastic re-constructive surgery procedures
were reported in Japanese Journal of Plastic and Re-constructive Surgery. Following this,
the Orthopaedic surgeons, Drs Paul Brand, Bunnels, Grace Warren, Palande, Srinivasan,
Fritschi and Boucher developed several surgical techniques for the correction of paralytic
deformities in leprosy. Most of these surgeries were carried out in established Hospitals.
In early 70’s, efforts were made to adopt these surgical techniques to be practiced in
peripheral hospitals. After initial experiments in a few centres in Nepal and India, civil
12
surgeons were given specialized training in leprosy surgery and were encouraged to carry
our leprosy re-constructive surgeries. Antia and Srinivasan then further simplified the
complex techniques of correcting the deformities, which require only minimal post-
operative care. This development has given confidence to several surgeons for
undertaking the leprosy surgeries at the district or taluk (sub-district) level hospitals. The
‘camp approach’ for surgical intervention has been very common for problems like
cataract, poliomyelitis and minor surgery.
2.2 WHY CAMP APPROACH?
Camp approach has three objectives. First objective is to do maximum surgery in limited
period of time in leprosy persons with deformity. The approach has come as a boon for
the leprosy-affected persons, as such facilities were grossly inadequate and were available
only at selected centres. It is also realized that such an intervention immediately reduces
the number of patients who need other rehabilitation measures such as socio-economic
rehabilitation. The undisputable lack of patients’ confidence in surgical interventions, due
to non-integration of leprosy surgery to General Hospitals, is one of the basic causes for
its poor response, which can be solved only through a logical step by integrating the
surgical management of leprosy patients along with the surgical care offered at general
hospitals. The overall strategy for such camp approach is to extend the benefit of surgery
to a large number of leprosy affected persons scattered over a wide area and had only
short period of contacts with health personnel. This will lead to changing practice in
management of reconstructive surgery in leprosy.
Second objective is to do surgery in young patient of productive age group because earlier
studies showed that there was a wide difference between prevalence of socio-economic
problems among leprosy affected persons with deformities and without deformities.27,28
13
The third objective is to perform surgery on priority basis in leprosy persons with
disability who are unable to perform their jobs due to their disability or the ones who may
lose their job due to disability. Deformities and disabilities caused by leprosy pose a
economic challenge to the patients and the nation. Economic loss to the country owing
the leprosy disability is estimated as $130 million (Max 1993). For individual patient, the
income loss is estimated as Rs. 1,040/- (US $ 22) per month on the average32.
Unemployment rate was found to have risen four-fold among leprosy disabled persons in
an endemic area of Tamil Nadu; unemployment due to leprosy disability was estimated as
29.7%.33 In addition, more than a third were pushed down towards lower level
occupations.
2.2.1 Camp approach in Gujarat
32
For many of those affected by leprosy, simply overcoming the infection is not sufficient
to allow a straightforward return to their previous life style.34 Leprosy centers at Gujarat
state for the past several years have been doing regular reconstructive surgery. However,
it was considered insufficient to achieve a significant downtrend in number of post
leprosy deformities and disabilities over a period. For instance, during 1996-04, only 376
surgeries were performed by the routine traditional approach. With 30 surgical units in
India35 carrying out 100 surgeries each per year, simple extrapolation suggests that it is
possible to perform a total of 3,000 surgeries per year. Even if the surgeries are conducted
uninterrupted for 10 years, it can only reach 3% of those who actually require such
surgeries.V In other words, it may not be possible to clear the backlog even after 100
years.31
V It is estimated that about 1 million leprosy-afflicted persons require reconstructive surgery in India.
It is in this context, camp approach was proposed and organized in Gujarat. If it
14
was not organized, it may have taken many years to do reconstructive surgery for 5,023
persons requiring such surgeries in Gujarat as per a “guestimate”.
The Leprosy hospitals in the state assisted in taking care of the late postoperative patient
requiring hospitalization. They were also been utilized for postoperative follow up
examinations and physiotherapy. In addition the patients were encouraged to come to the
31
Camp approach started with the information campaign carried out by grass root leprosy
workers. All staff linked with sub centers and primary health centers were also associated
with the campaign. They were briefed and reoriented about the possible rehabilitation of
the disabled leprosy patients by reconstructive surgery absolutely at free of cost. Data
collected from each unit was compiled centrally. The collaboration with NGOs as
designated by GOI to undertake the camp approach was established. Under the banner of
the NGOs the camp approach was done at S.S.G. Hospital (Government Medical College
Hospital, Vadodara).
Before embarking on the project, a pre-surgical sensitization and training was held for the
Leprosy workers, Physiotherapists, Surgeons and NGO’s. Each of them was briefed about
the project and their role in it. The expert surgeons were invited from the state and the rest
of the country. To maximally utilize the time of the experts, the operation theatres in the
camps were planned to run continuously 24 hours a day for all the day of the surgical
camp. The organizer had arranged for food and lodging for all the patients. The
Reconstruction surgeons and the Physiotherapists examined all the patients pre-
operatively, and their deformities were recorded and Surgeries were planned. The
patients were taken in batches to the campsite. After the Surgery the patients were
monitored in the post operative ward for as long as required and then transferred to their
respective Leprosy Centers.
15
Leprosy centers for vocational training after complete recovery from the surgery. It has
been strongly emphasized that the success of surgery in leprosy requires knowledge and
motivation on the part of the both the patient and the team managing and treating them36.
During 1st January 1999 to 30th
2.3 FRAMEWORK FOR THIS STUDY
April 2004, a total of 11 such camps were conducted and
5,023 leprosy-afflicted persons with disabilities were operated. An attempt to find out the
overall impact of camp approach will be very useful for the programme managers and for
development of future policy, as the approach was carried out in a big way involving
huge manpower, materials and logistics.
As stated earlier, this study evaluates the functional, economic and social impact of
surgical intervention through camp approach. Disability is conceptualized as being a
multi-dimensional experience for the person involved. There may be effects on organs or
body parts, for example impairment of the structure and/or function of the eye. There may
be effects on certain activities such as seeing and producing messages. There may be
effects on participation in areas of human life such as education and work or leisure.
Correspondingly, three components of disability are recognized in the ICF 200137 - Body
structure and function (and impairment thereof); Activity (and activity limitations); and
Participation (and participation restriction). Disability arises when any or all of the
negative outcomes occur-impairment, activity limitation and/or participation restriction –
when they are associated with a related ‘health condition’ (leprosy), when restriction in
participation may occur for reasons other than a health–related condition, these
restrictions are not considered to be included in the scope of ‘disability. Figure-2.1
explains the conceptual framework for this study. As it can be seen, this study approaches
16
disability from three dimensions – physical, economic and social. The impact of the
intervention is also assessed from this perspective.
Figure-2.1. Conceptual framework
PART – II: Methodology
2.4 STUDY DESIGN
This study is a cross sectional descriptive study. The study included leprosy patients who
lived in Vadodara district and had undergone major corrective surgery for their
established paralytic deformities during “surgical camps” organized by the Government
of Gujarat. The major surgery included correction of paralytic deformities such as claw
fingers, thumb paralysis, foot-drop and lagophthalmos as well as non-specific deformities
of the face (like loss of eyebrow, depressed nose etc,). Out of 279 leprosy patients, 57
patients were to be assessed for joint range of motion (Hand, Feet and Eyes).
Physiotherapists did their preoperative assessment for joint range of motion. Secondary
data was available for these 57 patients. All 279 patients were assessed for activity of
Persons affected with Leprosy
Disabilities
Body function and structure (Impairment)
Activity
Limitation
Participation Restriction
Surgical Intervention
Improvement in social
participation
Economic
Improvement
Physical & Functional
Improvement
17
restriction (GPAS 1998). This study do not look after different varieties of surgery
conducted by various surgeons.
The study area chosen was Vadodara district of Gujarat with a population of 37,89,050. It
is located 100 km south from Gandhi Nagar, the capital of Gujarat. Vadodara district was
the first district selected in June 1984 as a pilot project for MDT implementation under
National Leprosy Elimination Programme by GOI. It had already completed 18 years for
MDT implementation. All the major camps were organized in S.S.G. Hospital, Medical
College Hospital, Vadodara. The preoperative and post operative care and physiotherapy
was done at 150-bedded Anasuya Leprosy Hospital, which is also located in Vadodara
City. As available secondary data from both hospitals is useful for a comparison of
results, Vadodara district was selected for this study.
The District Leprosy Officer is in-charge of NLEP activities in Vadodara district and
leprosy control activities are undertaken through district leprosy society. The leprosy
elimination activities are integrated with general health services. The district has 75 PHCs
and 15 Community Health Centers (CHC). All paramedical workers (PMW) of leprosy
vertical programme are now posted at PHC/CHC. There is one leprosy control unit, one
urban leprosy control unit and two Non Governmental Organisations working for leprosy
in Vadodara district
2.4.1 Exclusion criteria for the subjects
The following categories of patients were excluded from the study:
• Patients who have undergone minor surgery procedures such as nerve
release, skin graft, wound debridement and sepsis.
• Patients who are unwilling to co-operative with the respondents
• Patients who have moved out of the area.
18
As per Government of India guidelines, reconstructive surgery is divided into major
reconstructive surgery and minor reconstructive surgery. In this study, only those who
underwent major surgery were included. As all the patients who have undergone major
reconstructive surgery were included in the study, there was no need for sampling. Out of
527 persons operated, 376 underwent major reconstructive surgery and 279 (74.2%) were
interviewed; 56 (14.9%) had left the area and 41 (10.9%) had expired.
2.5 INSTRUMENTS/TOOLS
2.5.1 Assessment of the structural improvement
Each disabled leprosy patient was interviewed with the help of specially designed
standard questionnaire. The base-line data of all the patients who underwent surgery
during the camps were extracted from the records of the Anasuya Leprosy Hospital,
Vadodara. Five research teams consisting of one Medical Officer and one Physiotherapist
were formed and were briefed about the purpose of the study, data collection techniques
and the questionnaire. One-day orientation training was conducted for this purpose by the
researcher with the help of a senior Physiotherapist from Bombay leprosy project,
Bombay. Instructions on each variable were also explained to each team member
individually. Local health workers assisted the team in completing the interviews.
The interview schedule consisted of semi-structured as well as structured questions.
Semi-structured questions have a set of pre-determined (pre-constructed) relevant
responses that were conforming to the objective of specific variables to be studied.
Enough care was taken to maintain its internal consistency without any ambiguity while
constructing the interview schedule. Questions were arranged in the order of logical
sequence and worded in as simple language as possible. Wherever the validity of the
responses could not be assessed, a simple scoring system was developed. It was checked
19
that respondents do not have any difficulty in choosing the response options. Since most
of the sub-titles of the interview schedules were derived from existing standard
procedures, no pre-testing of the schedule was done. Structural assessment was done by
• Assessment of disability (before and after surgery) – EHF Score
• Assessment of joint range of motion – only the body parts corrected by
surgery (Angle measurements)
2.5.1.1 EHF Score
The WHO disability grading (1988) scale (0-2) for eyes, hands and feet (6 sites) was used
to measure of impairment. Individual grades for the 6 sites (2 eyes, 2 feet and 2 hands)
were summed up to form the EHF score (range 0-12). Scores before and after the surgery
were compared to find out the impact. After surgery some patient of Grade II disability
may be improved partially only but they are considered as visible deformity Grade II and
EHF score is computed by seeing actual structural disability of the patient.
2.5.1.2. Assessment of joint range of motion ROM for body parts corrected by
surgery (angle measurements)
The difference in the angle was gradedVI
1) no change
as follows :
2) mild improvement
3) moderate improvement
4) marked improvement.
VI No change - Difference in sum score of unassisted angle 10-300; minimum improvement - difference in sum score of unassisted angle 310–600; moderate improvement - difference in sum score of unassisted angle 610 – 900; and marked improvement - difference in sum score of unassisted angle > 900
20
2.5.2. Functional improvement - activity restriction (Green Pastures Activity Scale,
1998)
Assessment of functional improvement was done on the basis of International
Classification of Impairments, Disability and Health (ICIDH-2) developed by Green
Pastures Leprosy Hospital, Nepal known as Green Pastures Activity Scale (GPAS). This
questionnaire consists of 34 activity-based questions and 5 relationship questions. The
GPAS scale was used to identify the limitations in activities (ADL) due to disability
among the leprosy patients living in rural settings. The assessment of activity restriction
due to the deformity while performing various activities was assessed using a 4-point
scale (1- no difficulty, 2 – mild difficulty, 3- moderate difficulty, 4 – severe difficulty).
Questions pertaining to walking, sitting, seeing, preparing meals, activities in and around
house, drinking, eating, dressing and self-care were also included. Same questions were
repeated to record the responses before and after surgery. However, minor modification
was done in the standard schedule to suit local milieu.
2.5.3. Assessment of social participation
Activity is the execution of a task or action by an individual37. Participation is
involvement in life situation. Participation in the community refers to the phenomenon of
executing one’s role in society or taking part in activities in a group situation.
Participation restrictions are problems an individual may experience in involvement in
life situations. The Participation Scale is an 18-item-interview-based instrument to
measure perceived problems in major domains of life. The scale allows quantification of
participation restrictions experienced by people affected by leprosy disability or other
stigmatized conditions.
21
The Participation Scale intends to measure restrictions due to disability/disease, not the
restrictions due to practices, which are part of their culture. To eliminate these cultural
influences, questions were asked to compare his/her situation with that of their peers VII
2.5.4. Economic improvement
.
The respondent was asked whether he/she was restricted in participation in comparison to
the peers. After the interview, the score for each item was transferred to the ‘score’
column and added up. The sum score was then written in the box marked ‘Total’. As the
scores for each item was between 0-4, the range for the sum score was 0-72. The current
recommended cut of for restriction in social participation is 12. When the total score
exceed 12 there is a remarkable restriction in social participation.
Separate questions were asked for economic improvement due to surgical intervention by
asking about the economic status before and after deformity and before and after surgery.
For economic status, two statuses were considered – occupation and income. Occupation
and income statuses were compared before and after deformity and surgery to find out the
impact of deformity and surgery. Besides assessment of these two, economic role of the
leprosy-afflicted persons was also obtained in the same manner. Economic role means the
rank order of the affected person within the household in terms of economic capability.
All these were done to find out whether deformity made the person slip in economic
status and whether surgery restored the status. The inflation rate over years is not counted
for economic improvement as well as there may be recall bias in collection of economic
data.
VII Peers are those who are similar to the respondent in all respects (socio-cultural, economic and demographic) except for the disease or disability.
22
2.6. VARIABLES
Key variables for this study were the physical, economic and social conditions of the
affected persons before and after surgery. This goes with the objectives of the
reconstructive surgery. Outcome measures included improvement of EHF score, joint
range of motion, change in activity restriction, progress in social participation, gain in
income generation and measurement of family and social acceptance. The interview
scheduleVIII
2.7. DATA ANALYSIS
sought information on age, sex, residential location, type of the leprosy
occupation, type of deformity, duration of deformity, severity of deformity, the type of
surgery, occupation, income, economic role, household movements, outside movements
and social participation. Assessment of Joint range motion of finger joints, thumb joints
and ankle joints was found useful to assess structural improvement after surgery.
Data were entered in Excel spreadsheet and analysis was carried out using SPSS.
Frequency distributions were done. Due to non-parametric nature of data, two tests
(Paired samples T-test and Wilcoxon Signed Ranks Test) were employed to assess the
situation before and after surgery. Rates and ratios were found sufficient in many
instances.
Paired samples T-test. Compares average mean score of two samples.
Wilcoxon Signed Ranks Test. This test indicates the test significance. If P value is <
0.05, the test is considered significant.
VIII The complete schedule is reproduced in annexure.
23
2.8. ETHICAL CONSIDERATION
Informed consent was taken from each study subject before administering schedule and it
was assured to them that information collected in the schedule will be confidential and
used only for research purpose.
24
3. RESULTS AND ANALYSIS
This chapter, divided into 5 sections, reports the results. First section describes general
characteristics of the subjects whereas the second section deals with the structural
improvement. Third section brings out the results concerning functional improvement and
the fourth section assesses the social participation. The last section provides the results of
the assessment of economic improvements.
3.1. GENERAL CHARACTERISTICS
In all, 279 subjects who had undergone major reconstructive surgeries in the camp
approach were interviewed. Age, sex and marital status of the subjects are given in Table-
3.1. Majority (50.2%) of the subjects fell in the productive age group of 15-45 years;
73.5% were males. Male predominance suggests that male being an earning member tend
to seek better attention for improving their functional status by correcting their
deformities. Alternatively, this may be due to the fact that generally males are affected by
leprosy more than females and the male-female ratio is often 2:1. Majority of the patients
(71.3%) were married and mostly having medium-sized families. These patients appear to
be better motivated and well supported by the family, which was a positive factor towards
their rehabilitation. Divorce proportion was 2.2% and it was not clear whether the
presence of deformity was the reason as a ground for their divorce. About 60% of the
subjects belonged to Schedule Caste/Tribe and 74.9% lived in joint family; about half
were illiterate.
Most of them (97.1%) were treated for restoring functions and only some (2.9%) were
treated for cosmetic corrections. Therefore the effects of deformity and the anticipation of
function gain after surgery will greatly increase the anxiety of the patients. It must be
25
stressed that the surgical procedures performed to correct various deformities have their
own limitations and all delicate functions cannot be restored back. Our results reflect the
realistic expectations of the patients in terms of functional, social and economical
improvement after surgery.
TABLE-3.1.
AGE GROUP, SEX & MARITAL STATUS
Age group in
Years
Unmarried Married Widower Divorcee Separated
Male
Fem
ale
Tota
l
Male
Fem
ale
Male
Fem
ale
Male
Fem
ale
Male
Fem
ale
Male
Fem
ale
≤ 14 1 2 - - - - - - - - 1 2 3 (1.1)
15 – 45 24 3 67 32 5 3 2 3 1 - 99 41 140 (50.2)
46 – 60 2 - 59 15 14 6 1 - - 1 76 22 98 (35.1)
≥ 61 1 - 23 3 5 6 - - - - 29 9 38 (13.6)
Total 33 (11.8) 119 (71.3) 39 (14.0) 6 (2.2) 2 (0.7) 205 (73.5)
74 (26.5) 279 (100)
It appeared important to distinguish between different types of leprosy, because it is
assumed that the possible effect of surgery on the course of leprosy might give rise to
sudden exacerbation of the disease such as lepra reaction. About 4% of the patients had
MB +ve type of disease; none of them had morbid status of leprosy following surgery
(Table-3.2). Over 80% were on MB–MDT treatment while 16.1% received PB–MDT
treatment; 9 were on DDS monotherapy. Most patients had progressive type of the
disease (MB) and had multiple deformities severely affecting their functional and social
status. One PB patient was on MB-MDT due to relapse.
26
TABLE-3.2.
TYPE OF LEPROSY & TREATMENT STATUS
Type of Leprosy
Treatment Total
DDS PB MDT MB MDT
PB 6 45 1 52 (18.6)
MB –ve 3 213 216 (77.5)
MB +ve 11 11 (3.9)
Total 9 (3.2) 45 (16.1) 225 (80.7) 279 (100) It is recommended that a leprosy patient with deformities should not be subjected to
reconstructive surgery till the disease is ‘quiescent’ and that the deformity is stable.
However deformities of hands and feet are often corrected at a later stage, as the surgical
facilities are not available widely in most part of the country. In this study, 58.1% had
long-standing deformities and have undergone reconstructive surgery (Table-3.3). As
most of these patients got themselves adjusted to their deformity, it was a challenge to re-
educate the patients after corrective surgery. Therefore, this factor might reflect in poor
outcome of surgery.
Table-3.3. Duration of Deformity
DURATION IN YEARS NO. OF PERSONS (%)
0 – 2 53 (19.0)
2 – 5 64 (22.9)
> 5 162 (58.1)
Total (100)
27
3.2. STRUCTURAL IMPROVEMENT
3.2.1. Structural changes after surgery
EHF Score is the sum score of WHO disability grading (1988) which has been widely used
to assess the progress over a period of time with specific intervention. Box- 3.1 shows that
the mean disability score was 3.18 before surgery and there has been a significant
(P<0.001) reduction of 22.6% in mean score after surgery.
Box-3.1. CHANGES IN EHF SCORE AFTER THE SURGERY
Period Mean Score of EHF
( X ± SD)
Before Surgery 3.18 ± 2.02
After Surgery 2.46 ± 2.27
By paired T – Test P < 0.001
Tabel-3.4 reports the structural changes after surgery in eyes. Movement towards lower
diagonal cells (light shaded cells) indicates improvement. As it can be seen, conditions of
12 subjects improved after surgery in right eye while it was the case in 8 subjects in the
case of left eye. Similarly, 53 (19%) subjects showed improvement in the right hand and
40 (14.3%) in the case of left hand (Table-3.5). In the case of feet, it was 4 and 2
respectively for right and left foot (Table-3.6). While the improvement after surgery was
statistically significant in the case of eyes and hands, it was not the case with respect to
the feet.
28
TABLE-3.4.
CHANGES IN DISABILITY GRADES OF EYES AFTER SURGERY
RIGHT EYE LEFT EYE
BEF
OR
E SU
RG
ERY
AFTER SURGERY
BEF
ORE
SURG
ERY
AFTER SURGERY
No
Defo
rmity
Anas
thes
ia
Visib
le de
form
ity
Tota
l No
De
form
ity
Anas
thes
ia
Visib
le de
form
ity
Tota
l
No
Defo
rmity
264 (100) - - 264
(100) No
Defo
rmity
262
(100) - - 262 (100)
Anas
thes
ia
- - - -
Anas
thes
ia
- - - -
Visib
le de
form
ity
11 (73.3)
1 (6.7)
3 (20.0)
15 (100) Vi
sible
defo
rmity
8 (47.1) - 9
(52.9) 17
(100)
Tota
l 275 (98.6)
1 (0.4)
3 (1.1)
279 (100) To
tal 270
(96.8) - 9 (3.2)
279 (100)
By Wilcoxon Signed Ranks Test P = 0.001 P = 0.005
29
Table-3.5 CHANGES IN DISABILITY GRADES OF HANDS AFTER SURGERY
RIGHT HAND LEFT HAND
BEFO
RE
SURG
ERY
AFTER SURGERY
BEFO
RE
SURG
ERY
AFTER SURGERY
No
Defo
rmity
Anas
thes
ia
Visib
le de
form
ity
Tota
l
No
Defo
rmity
Anas
thes
ia
Visib
le de
form
ity
Tota
l
No
Defo
rmity
115 (100) - - 115
(100) No
Defo
rmity
121 - - 121 (43.4)
Anas
thes
ia
- 9 (100) - 9
(100)
Anas
thes
ia
- 1 - 1 (0.4)
Visib
le de
form
ity
33 (21.3)
20 (12.9)
102 (65.8)
155 (100) Vi
sible
defo
rmity
26 14 117 157
(56.3)
Tota
l 148 (53.0)
029 (10.4)
102 (36.6)
279 (100) To
tal 147
(52.7) 15
(5.4) 117
(41.9) 279
(100)
By Wilcoxon Signed Ranks Test P < 0.001 P < 0.001
3.2.2. Assessment of Joint Range of Motion (ROM) – Angle Measurement
Out of the 279 leprosy patients interviewed, the pre-operative assessments were available
for 57 (20.4%) patients. Although the post-operative Functional Assessment was done for
all the patients interviewed by GPAS, only the assessment by angle measurement of 57
patients were analyzed and compared and 64 types of reconstructive surgeries were
performed in these patients (Graph –1, see Annexure III). Results are provided in Table-
3.7. The table reveals that out of 54 patients analyzed for claw hand in ring and little
fingers, 37 (68.5%) showed minimum to maximum improvement in ROM.
30
Table-3.6 CHANGES IN DISABILITY GRADES OF FEET AFTER SURGERY
RIGHT FEET LEFT FEET BE
FORE
SUR
GERY
AFTER SURGERY
BEFO
RE S
URGE
RY
AFTER SURGERY
No
Defo
rmity
Anas
thes
ia
Visib
le de
form
ity
Tota
l
No
Defo
rmity
Anas
thes
ia
Visib
le de
form
ity
Tota
l
No
Defo
rmity
223 (100) - - 223
(100) No
Defo
rmity
219 (100) - - 219
(100)
Anas
thes
ia
- 21 (100) - 21
(100)
Anas
thes
ia
- 22 (100) - 22
(100)
Visib
le de
form
ity
2 (5.7)
2 (5.7)
31 (88.6)
35 (100) Vi
sible
defo
rmity
2 (5.3) - 36
(94.7) 38
(100)
Tota
l 225 (80.7)
23 (8.2)
31 (11.1)
279 (100) To
tal 221
(79.2) 22
(7.9) 36
(12.9) 279
(100)
By Wilcoxon Signed Ranks Test P = 0.063 P = 0.157
The paralysis of intrinsic muscles of the hand leads to claw finger deformity. This
deformity makes the pinch and grasps movements difficult. In ulnar nerve lesion, usually
ring and little fingers are only affected and all the fingers are rarely affected. In ulnar and
median nerve lesion, all the four fingers as well as thumb are also deformed. In this
analysis, out of 54 claw hand deformity corrected, 23 (43%) were in right hand and 31
(57%) in left hand. Although the surgery was aimed at correcting the deformity of ring
and little finger, however, all the fingers are corrected if all are involved. The outcome of
the surgery is related to the difference in the degree of joint range of movements (ROM)
before and after surgery. The difference in the degree was gradedIX
IX No change - Difference in sum score of unassisted angle 10-300; minimum improvement - difference in sum score of unassisted angle 310–600; moderate improvement - difference in sum score of unassisted angle 610 – 900; and marked improvement - difference in sum score of unassisted angle > 900
as 1) No change, 2)
31
Mild improvement, 3) Moderate improvement and 4) Marked improvement. 8 patients
had underdone surgery in ape thumb. Results indicated that there was a minor
improvement in its structure. Structural changes in the thumb were assessed without a
goniometerX. This is how it is usually done. For foot drop and lagopthalmos, only one
patient in each category had both pre and postoperative assessment available. In the case
of foot drop, the patient showed moderate improvement in active drosi-flexion after
surgery and mild to moderate improvement in passive dorsi flexion with knee joint
straight and knee joint bent to 900
Grades of improvement
. For Lagopthalmos, the patient showed marked
improvement in eye lid closure after surgery, however there was no change in the vision
status.
Table–3.7 CORRECTION OF CLAW HAND DEFORMITY (N = 54)
Range of motion – PIP Joint
Index Finger Middle Finger Ring Finger Little Finger
UNAS
SIST
ED
Assis
ted
CONT
RACT
URE
UNAS
SIST
ED
Assis
ted
CONT
RACT
URE
UNAS
SIST
ED
Assis
ted
CONT
RACT
URE
UNAS
SIST
ED
Assis
ted
CONT
RACT
URE
No change 37 48 50 40 40 46 17 35 43 17 34 38
Minimum improvement 13 5 3 7 8 6 27 11 8 20 8 13
Moderate improvement 2 0 1 4 4 0 6 3 3 10 6 2
Maximum improvement 2 1 0 3 2 2 4 4 0 7 6 1
54 54 54 54 54 54 54 54 54 54 54 54
3.3. FUNCTIONAL IMPROVEMENT
Functional improvement was assessed with 34 activity-based questions with 4-point scale
- (1) No difficulty, (2) Mild difficulty, (3) Moderate difficulty and (4) Severe difficulty.
X For this purpose, the examiner passively abducted and opposed the thumb fully. If he/she was able to bring the thumb perpendicular to the hand, it was termed as “normal” and if there was slight restriction, then it was termed as adequate. If it was not possible to abduct the thumb, then it was termed as “contracted”.
32
There were a total 9 groups of activities. All the operational definitions of each activity
are given in Annexure–II. Out of 279 subjects, 21 (7.5%) reported improvement in
walking after surgery (Table-3.8); 16 (5.7%) people also reported worsening after the
surgery.
Table-3.8 IMPROVEMENT IN WALKING AFTER THE SURGERY
BEFO
RE
SU
RG
ER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
205 (94.5)
3 (1.4)
9 (4.1) - 217
(100)
Mild Difficulty
8 (40.0)
8 (40.0)
1 (5.0)
3 (15.0)
20 (100)
Moderate Difficulty
4 (19.0)
1 (4.8)
16 (76.2) - 21
(100)
Severe Difficulty - 3
(14.3) 5
(23.8) 13
(61.1) 21
(100)
Total 217 (77.8) 15 (5.4) 31 (11.1) 16 (5.7) 279 (100) By Wilcoxon Signed Ranks Test P = 0.726
The statistical test was insignificant. It was true for sitting and getting up activity as well
(Table-3.9). Regarding eyes, structural improvement was not translated into functional
improvement, which may be attributed to the fact that many of them had developed
cataracts after surgical correction of lagopthalmos (Table-3.10). In fact, there was a
significant decline in the eyesight. However, many (45.5%) were able to improve in their
cooking activity after their surgery and it was statistically significant (Table-3.11).
Similarly, they have shown significant improvement in performing their routine activities
within the house (Table-3.12). It is true for activities outside the house too (Table-3.13).
Dressing, taking care of oneself, eating and drinking also improved after surgery in a
significant number of subjects (Tables – 3.14 to 3.16).
33
Table–3.9 IMPROVEMENT IN SITTING AND GETTING UP AFTER SURGERY
BEFO
RE
SU
RG
ER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
225 (97.0)
1 (0.4)
6 (2.6) - 232
(100)
Mild Difficulty
4 (22.2)
9 (50.0)
3 (16.7)
2 (11.1)
18 (100)
Moderate Difficulty
1 (5.9)
4 (23.5)
12 (70.6) - 17
(100)
Severe Difficulty - 1
(8.3) 5
(41.7) 6
(50.0) 12
(100)
Total 230 (82.4) 15 (5.4) 26 (9.3) 8 (2.9) 279 (100) By Wilcoxon Signed Ranks Test P = 0.501
In the improvement in sitting and getting up after surgery 5.4% had shown improvement,
90.3% remained same, and 4.3% had shown worsening.
Table–3.10 CHANGES IN SEEING AFTER THE SURGERY
BEFO
RE
SU
RG
ER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
206 (89.2)
15 (6.5)
8 (3.5)
2 (0.9)
231 (100)
Mild Difficulty
4 (20.0)
12 (60.0)
2 (10.0)
2 (10.0)
20 (100)
Moderate Difficulty
2 (8.7)
3 (13.0)
17 (73.9)
1 (4.3)
23 (100)
Severe Difficulty - 1
(20.0) 1
(20.0) 3
(60.0) 5
(100)
Total 212 (76.0) 31 (11.1) 28 (10.0) 8 (2.9) 279 (100) By Wilcoxon Signed Ranks Test P = 0.003
34
Table–3.11
CHANGES IN PREPARING MEALS AFTER THE SURGERY
BEFO
RE
SUR
GER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
59 (85.5)
3 (4.3)
3 (4.3)
4 (5.8)
69 (100)
Mild Difficulty
23 (42.6)
14 (25.9)
13 (24.1)
4 (7.4)
54 (100)
Moderate Difficulty
27 (32.9)
29 (35.4)
21 (25.6)
5 (6.1)
82 (100)
Severe Difficulty
13 (17.6)
21 (28.6)
14 (18.9)
26 (35.1)
74 (100)
Total 122 (43.7) 67 (24.0) 51 (18.3) 39 (14.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
This table revel that in preparing meals after surgery 45.5% have improved 43.0%
remained same, and 11.5% have worsened. The P value is highly statistically significant.
Table–3.12 ACTIVITIES IN THE HOUSE
BEFO
RE
SUR
GE
RY
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty
Total
No Difficulty
88 (92.6)
1 (1.1)
3 (3.2)
3 (3.2)
95 (100)
Mild Difficulty
28 (43.1)
19 (29.2)
17 (26.2)
1 (1.5)
65 (100)
Moderate Difficulty
25 (38.5)
20 (30.8)
18 (27.7)
2 (3.1)
65 (100)
Severe Difficulty
14 (25.9)
10 (18.5)
14 (25.9)
16 (29.6)
54 (100)
Total 155 (55.6) 50 (17.9) 52 (18.6) 22 (7.9) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
Regarding activities in the house 39.8% have improved, 50.5% of study subjects
remained same after surgery, and 9.7% have worsened.
35
Table–3.13 CHANGES IN ACTIVITIES AROUND THE HOUSE OR IN THE FIELD
AFTER THE SURGERY
BEFO
RE
SUR
GER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
57 (87.7)
1 (1.5)
4 (6.2)
3 (4.6)
65 (100)
Mild Difficulty
25 (43.1)
13 (22.4)
16 (27.6)
4 (6.9)
58 (100)
Moderate Difficulty
19 (30.6)
21 (33.9)
18 (29.0)
4 (6.5)
62 (100)
Severe Difficulty
14 (14.9)
20 (21.3)
17 (18.1)
43 (45.7)
94 (100)
Total 115 (41.2) 55 (19.7) 55 (19.7) 54 (19.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
Regarding activities around the house or in the field after surgery 41.5% have improved,
47.0% remained same, and 11.5% have worsened.
Table-3.14 CHANGES IN LOOKING AFTER YOUR SELF / CARING FOR YOURSELF
AFTER THE SURGERY
BEFO
RE
SU
RG
ERY
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
60 (89.6)
3 (4.5)
2 (3.0)
2 (3.0)
67 (100)
Mild Difficulty
29 (48.3)
18 (30.6)
6 (10.0)
7 (11.7)
60 (100)
Moderate Difficulty
23 (34.3)
15 (22.4)
25 (37.3)
4 (6.0)
67 (100)
Severe Difficulty
10 (11.8)
12 (14.1)
21 (24.7)
42 (49.4)
85 (100)
Total 122 (43.7) 48 (17.2) 54 (19.4) 55 (19.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
Regarding looking after yourself / caring for yourself after surgery 39.4% have shown
improvement, 52.0% remained same, and 8.6% have shown worsening.
36
Table-3.15 CHANGES IN ACTIVITIES OF DRESSING
AFTER THE SURGERY
BEFO
RE
SUR
GER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
67 (91.8)
2 (2.7)
2 (2.7)
2 (2.7)
73 (100)
Mild Difficulty
34 (50.7)
15 (22.4)
14 (20.9)
4 (6.0)
67 (100)
Moderate Difficulty
22 (36.7)
12 (20.0)
22 (36.7)
4 (6.7)
60 (100)
Severe Difficulty
17 (21.5)
15 (19.0)
15 (19.0)
32 (40.5)
79 (100)
Total 140 (50.2) 44 (15.8) 53 (19.0) 42 (15.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
Regarding activities of dressing in the study subjects after surgery 41.2% have shown
improvement, 48.7% remained same, and 10.1% have shown worsening.
Table-3.16 CHANGES IN ACTIVITIES OF EATING & DRINKING
AFTER SURGERY
BEFO
RE
SU
RG
ER
Y
AFTER SURGERY
No Difficulty
Mild Difficulty
Moderate Difficulty
Severe Difficulty Total
No Difficulty
71 (93.4)
2 (2.6)
2 (2.6)
1 (1.3)
76 (100)
Mild Difficulty
30 (47.6)
14 (22.2)
14 (22.2)
5 (7.9)
63 (100)
Moderate Difficulty
24 (34.8)
16 (23.2)
27 (39.1)
2 (2.9)
69 (100)
Severe Difficulty
17 (23.9)
17 (23.9)
10 (14.1)
27 (38.0)
71 (100)
Total 142 (50.9) 49 (17.6) 53 (19.0) 35 (12.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
Regarding changes in the activities of eating and drinking after surgery 40.9% have
shown improvement, 49.8% of the study subjects remained same and 9.3% have shown
worsening.
37
3.4. SOCIAL PARTICIPATION
Assessment of social participation was done by the “participation scale” a new 18-item
interview-based instrument. This scale intends to measure the restriction due to
disabilities and leprosy, not the restriction due to practices, which are part of their culture.
There is a strong correlation between the deformities and the social factor as the physical
disabilities greatly influences the social outcome. Average score of social problems faced
by the patients before and after surgery is quantified using a 4-point scale. XI
BEFO
RE
The actual
average score covering 18 social activities of the patients was 10.03 ± 12.6 before surgery
and 5.87 ± 9.80 after surgery. This means that patients had already adapted to the social
problems even before surgery. However, surgery did contribute to reduction in restriction
of social participation of 41% and it helped the patients move towards ‘0’; the movement
was statistically significant (Paired t-test, P<0.001.)
TABLE-3.17 CHANGES IN SOCIAL PARTICIPATION SCALE AFTER THE SURGERY
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem
73 (93.6) - 1
(1.3) 2
(2.6) 2
(2.6) 78
(100)
Problem but fully adopted
4 (20.0)
11 (55.0)
3 (15.0)
1 (5.0)
1 (5.0)
20 (100)
Small problem
10 (23.3)
8 (18.6)
21 (48.8)
1 (2.3)
3 (7.0)
43 (100)
Medium Problem
20 (28.6)
12 (17.1)
15 (21.4)
22 (31.4)
1 (1.4)
70 (100)
Large Problem
10 (14.7)
6 (8.8)
7 (10.3)
5 (7.3)
40 (58.8)
68 (100)
Total 117 (41.9) 37 (13.3) 47 (16.8) 31 (11.1) 47 (16.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
XI A score of ‘0’ means that there was no problem, ‘1’ indicates slight problems but adapted with the situation, ‘2’ signifies mild problems but not coped, ‘3’ denotes moderate problems and ‘4’ indicates severe problem. So, the desirable score is somewhere close to ‘0’.
38
Table-3.17 reveals that surgery improved social participation in the case of 34.7%
patients. It can be recalled that the comparison was made keeping in mind the status of
their peers. Details of operational definition for each category are given in Annexure - II.
A separate analysis of all the 18 social participation questions is also given in Annexure-
III B. Maximum improvement was felt in the work and 31.2% replied that they were in a
position to work as hard as their peers after the surgery. The least impact was on
household decision-making and only 5% improved their decision making power within
the household. The least impact was also felt in the behaviour of the household members
in eating together, sitting together and use of same utensils.
3.5. ECONOMIC IMPROVEMENT
As it can be inferred from Table-3.18, 40 persons (14.3%) reported an increase in income
after the surgery. While deformity pushed 71 persons (25.5%) down in the income status,
surgery recovered it in 14.3% of persons. In some cases, income improved after deformity
because they entered into their bread-winning age group after deformity. Twenty-six
persons (9.4%) reported a decline in their income after surgery. Except one, who started
begging after surgery, others were pensioners or elders moved out of productive age
group.
Sixty-six persons (23.7%) changed their occupations after surgery (Table-3.19). It was
difficult to establish whether the change was better or worse, as the occupations are not
strictly comparable. Nevertheless, the change was clearly for the worse in case of
unemployment were 12.5% were unemployed before deformity, which is increased after
deformity upto 26.6% and there is no change after surgery. Majority of them was people
who retired from their work because of old age. Five persons seemed to have improved
their positions from their previous position of labour to that of salaried and farmer after
surgery.
39
Thirty persons (10.8%) improved their economic ranking within the household while
condition of an equal number of persons worsened (Table-3.20). A majority of them
retained their earlier position after surgery. This is in comparison to the worsening of the
ranking in the case of 72 persons (25.8%) after deformity. Hence, surgery seems to have
reduced the damage due to deformity.
Table-3.18. (A) CHANGE IN INDIVIDUAL INCOME
BEFO
RE
DEF
OR
MIT
Y
AFTER DEFORMITY
No
Inco
me
1-50
0 In
com
e
501-
1500
In
com
e
> 15
00
Inco
me
Tota
l
No Income
44 (83.3)
3 (5.9)
4 (7.8) - 51 (100)
1-500 Income
29 (33.0)
95 (75.4)
2 (1.6) - 126 (100)
501-1500 Income
8 (11.0)
20 (27.4)
45 (61.6) - 73 (100)
> 1500 Income
3 (10.3)
3 (10.3)
8 (27.6)
15 (51.7) 29 (100)
Total 84 (30.1) 121 (43.4) 59 (21.1) 15 (5.4) 279 (100)
Table-3.18. (B) CHANGE IN INDIVIDUAL INCOME
AFT
ER D
EFO
RM
ITY
BU
T B
EFO
RE
SUR
GER
Y
AFTER SUGERGY
No
Inco
me
1-50
0 In
com
e
501-
1500
In
com
e
> 15
00
Inco
me
Tota
l
No Income
60 (71.4)
16 (14.0)
5 (6.0)
3 (3.6)
84 (100)
1-500 Income
14 (11.6)
94 (71.7)
13 (10.7) - 121
(100) 501-1500 Income
3 (5.1)
5 (8.5)
48 (81.4)
3 (5.1)
59 (100)
> 1500 Income
1 (6.7)
2 (13.3)
1 (6.7)
11 (73.3)
15 (100)
Total 78 (28.0)
117 (41.9)
67 (24.0)
17 (6.1)
279 (100)
40
Table-3.19. (A) CHANGE IN OCCUPATION
AFTER DEFORMITY
Total BE
FORE
DEF
ORMI
TY
Labo
ur
Salar
ied
Farm
er
Unem
ploy
ed
Stud
ent
Prof
essio
nal
Labour 127 (76.0) - 3
(1.8) 34
(20.4) - 3 (1.8)
167 (100)
Salaried 4 (25.0)
9 (56.3)
1 (6.3)
1 (6.3) - 1
(6.3) 16
(100)
Farmer 3 (8.1) - 29
(78.4) 4
(10.8) - 1 (2.7)
37 (100)
Unemployed 2 (5.7) - - 33
(94.3) - - 35 (100)
Student 3 (18.8) - 1
(6.3) 1
(6.3) 10
(62.5) 1
(6.3) 16
(100)
Professional - - 1 (12.5)
1 (12.5) - 6
(75.0) 8
(100)
Total 139 (49.8)
9 (3.2)
35 (12.6)
74 (26.5)
10 (3.6)
12 (4.3)
279 (100)
Table-3.19. (A) CHANGE IN OCCUPATION
AFTE
R DE
FORM
ITY
BUT
BEFO
RE S
URGE
RY
AFTER SURGERY
Total
Labo
ur
Salar
ied
Farm
er
Unem
ploy
ed
Stud
ent
Prof
essio
nal
Labour 115 (82.7)
1 (0.7)
4 (2.9)
17 (12.2) - 2
(1.4) 139
(100)
Salaried - 7 (77.8) - - - 2
(22.2) 9
(100)
Farmer - 1 (2.9)
33 (94.3)
1 (2.9) - - 35
(100)
Unemployed 13 (17.6)
1 (1.4)
3 (4.1)
55 (74.3) - 2 74
(100)
Student 1 (10.0)
2 (20.0)
1 (10.0)
1 (10.0)
5 (50.0) - 10
(100)
Professional - - - - - 12 (100)
12 (100)
Total 129 (46.2)
12 (4.3)
41 (14.7)
74 (26.5)
5 (1.8)
18 (6.5)
279 (100)
41
Table-3.20 (A) ECONOMIC RANKING WITHIN THE HOUSEHOLD
BEFO
RE
DEF
OR
MIT
Y
AFTER DEFORMITY 0 3 2 1 Total
0 45 (88.2)
1 (2.0)
1 (2.0)
4 (7.8)
51 (100)
3 2 (33.3)
4 (66.7) - - 6
(100)
2 16 (30.8) - 36
(69.2) - 52 (100)
1 22 (12.9)
12 (7.1)
20 (11.8)
116 (68.2)
170 (100)
Total 85 (30.5)
17 (6.1)
57 (20.0)
120 (43.0)
279 (100)
Table-3.20 (B) ECONOMIC RANKING WITHIN THE HOUSEHOLD
AFTE
R DE
FORM
ITY
BUT
BEFO
RE S
URGE
RY AFTER SURGERY
0 3 2 1 Total
0 60 (70.6)
5 (5.9)
10 (11.8)
10 (11.8)
85 (100)
3 - 15 (88.2)
1 (5.9)
1 (5.9)
17 (100)
2 8 (14.0)
1 (1.8)
45 (78.9)
3 (5.3)
57 (100)
1 10 (8.3) - 10
(8.3) 100
(83.3) 120
(100)
Total 78 (28.0)
21 (71.5)
66 (23.7)
114 (40.9)
279 (100)
42
4. DISCUSSION AND CONCLUSIONS
The war against leprosy has seen many battles and each one of them has made a dent, be
it small or large, that has encouraged others to pool in their efforts and resources to
achieve better results in the future. The “camp approach” to reconstructive surgery of
leprosy-afflicted persons in Gujarat provided an opportunity to liberate the leprosy-
afflicted disabled persons from their deformities and disabilities – physically,
functionally, economically and socially.
Camps were useful to conduct surgery on 5,023 persons as again 376 conducted through
traditional routine surgery in various centres across the state. Hence, camp helped a
possible rehabilitation of 13.4 times more affected persons, who otherwise would have
waited for many years before the surgery materialized. It would have been a long wait for
them given the deteriorating nature of the leprosy deformity. Men were the major (73.5%)
beneficiaries of the camps partly because the disease and deformity are more prevalent
among men compared to women (2:1 ratio) and partly because they are the bread-winners
in many Gujarat families. This can be verified from the fact that a majority (50.2%) of
them who have undergone the surgery in camps belonged to 15-45 age group.
4.1. STRUCTURAL IMPROVEMENT
The operation site for a vast majority (88.5%) of the persons was hand (claw hand, ape
thumb, wrist drop) while it was eye (lagopthalmos) for 6.1% of the patients and it was
foot for 2.5% of them; another 2.9% have undergone cosmetic surgery (correction of
depressed nose and eyebrows). The results of this study go with another which revealed
that hand was the single most site that was operated.38 Significant reduction in EHF score
indicated that the surgery made an impact on the structure of the sites operated. Expert
opinion also suggests that surgery could correct most of the disabilities due to motor
43
paralysis and therefore, should be made available as a part of the leprosy
treatment/control.41 It is also very important to keep records of the range of joint
movement at each stage of progress, measured with a protractor with a swinging arm
(Known as Goniometer) and even very good guesswork on angles can be quite long way
out, if a different surgeon makes the second assessment.40 The aim of tendon transfer
surgery in leprosy is to restore optimum functional ability and appearance. Normal
function and appearance can neither be expected nor achieved as the surgery do not
replace the functions of all the paralyzed muscles and balance forces across the joint.
Hence the outcome of the surgery can only reflect the action gained through the
transferred muscle in achieving dynamic movements of the joints.
In the present study, 68.5% patients had shown moderate to significant changes in the
ROM in to the ring and little fingers. It is stated that the tendon transfer procedures do not
increase range of motion much but only maintain the range that existed before surgery
(pre-operatively). Hence, even a small degree of benefit from tendon transfer procedures
is often sufficient for the patient to resume a reasonable normal gait.41 A long-term
follow-up ranging from 6 to 120 months (average 56 months) of 25 leprosy patients with
irreversible ulnar nerve palsy (claw hand deformity) who underwent tendon transfer
procedure (reconstructive surgery) have shown that the mean rate of improvement in
patients with <300 unassisted and assisted angles during pre-operative was significantly
better (MRI 90%) than patients with >30 0 (MRI 47%).
Surgical correction of lagophthalmos is mandatory in order to protect the eye (vision)
from danger of repeated keratitis and consequent total blindness.
42
43 This is apparently due
to the reason that the transferred muscle (Temporalis) is substituted for performing
another muscle action (Orbicularis Occuli). In the present study, one patient showed
marked improvement in eye lid closure after surgery and in EHF, 2.9-4.3% showed
44
improvement in grade-2 deformity in Left & Right eyes respectively. Our results
conforms to the findings of another study where all the 30 cases the temporalis muscle
transfer surgery was successful. It is also relatively easy to train the patient in using the
transferred muscle and the surgery procedure is simple.44
Regarding foot surgery, one patient with foot-drop had shown moderate improvement in
active dorsiflexion after surgery. EHF score concerning feet showed 0.7-1.4%
improvement in left & right foot respectively. Another study has found that the active
range (angles) of dorsiflexion progressed from 9.3 to 15.5 at the time of discharge and it
was 11.1 to 20 at review after 2 years of 65 patients who underwent corrective surgery for
foot-drop. This could be due to the drop in resting angle and active range of plantar
flexion has increased during review after 2 years.45 A retrospective follow-up study of
101 patients having 105 foot-drop correction operations found good improvement in 71
patients with 50 more active dorsiflexion and active plantar flexion (100 active range of
movement).46 In another study, 21 out of 22 patients with foot-drop in whom the surgery
was performed were able to extend the foot above the neutral position and 14 of them had
normal gait.
4.2. FUNCTIONAL, SOCIAL AND ECONOMIC IMPROVEMENT
47
It has been known that the leprosy patients with impairments experience limitation of
activities, which can be partially overcome with the help of assistive devices, training and
surgery and as a result of these activity limitations, they are restricted in their social
participation.48 In this study, maximum (45.5%) functional improvement was found in the
preparation of meals at home whereas in the case of eyesight, only minimum (3.9%)
improvement was possible. However, in 11.5% of patients, their movement outside the
house was affected after surgery.
45
Social stigma among leprosy patients is brought out by many studies.49-50,54 A cohort
study revealed that 2.4% of leprosy patients experienced stigma even within one month of
the diagnosis.49 Stigma is specifically high among those with deformity as found by
Kopparty.50 A workshop on social integration recommended that social and economic
integration and empowerment of persons affected by leprosy should be a priority for
leprosy programme planners along with the cure and prevention of disabilities.51 With
advances in treatment procedures and surgery, institution-based rehabilitation has become
outdated and the cure for leprosy remain incomplete until the people affected regain the
social and economic status that allows a dignified life.52 In the present study, social
participation improved to the extent of 34.7% after surgery while 5.4% complained of
worsening. Although there is an improvement after surgery among the study subjects, it
appears inadequate compared to the results shown by others.
Economic loss is another negative outcome of leprosy in general and deformity in
particular. Studies have shown that the economic loss was higher among those who are
deformed.
53
55-59,32 Studies have reported an income loss in the range of 20-75% compared
to what they were earning prior to deformity.32,54,57-59 Disabilities caused by leprosy pose
a big economic challenge not only to the patients but also to the nation. Economic loss to
India owing to leprosy disability is estimated as $130 million.58 Absolute loss to an
individual residing in rural area is estimated as Rs.1,040/- (about 22 dollars) per month on
the average.32 Unemployment rate too was found to have risen 4-fold among leprosy
disabled persons in an endemic area of Tamil Nadu with extra unemployment due to
leprosy disability was estimated as 29.7%.33 In a survey conducted in a part of Kenya,
majority of the disabled leprosy patients lost their jobs and their earning capacity and
became a burden to their families and in the long run to the entire community/state).59The
reduced employment of leprosy patients with deformity is clearly related to decreased
46
community acceptance.56 This study, although did not quantify the actual income loss to
an individual, found that 25.8% of the study subjects reported an income loss. Another
study in Andhra Pradesh and Orissa has found the proportion to be 16% among its
subjects.
4.3. CONCLUSION
54
Given this, one of the surgery’s benefits would include economic improvement. In this
study, while social improvement on account of surgery was about 35%, economic
improvement was 14.3% although some of them stopped earning after surgery due to
retirement and old age. While there was an improvement in income, it was not enough to
offset the loss owing to deformity. Given the irreversible nature of leprosy deformity and
even possible worsening, even an improvement of 14.3% is significant.
Reconstructive surgery helps patients of all ages and types - whether it's a developmental
abnormalities or deformities acquired as a result of accident, infection, disease, or in some
cases, aging. The goal of reconstructive surgery is to improve function, but may also be
done to approximate a normal appearance. Although no amount of surgery can achieve
"perfection," modern treatment options allow surgeons to achieve improvements in form
and function thought to be impossible 10 years ago.
Finding of this study demonstrated that there was an improvement in structural,
functional, social and economic aspects of deformed leprosy-afflicted persons after
surgery through camp approach. First of all, camp approach achieved greater number
(13.4 times) of surgeries than the traditional approach. More importantly, majority of
patients on whom surgical correction was attempted belonged to the productive age group
of 15-45 years. Surgical correction was attempted in hand in majority of patients and
about two-third have shown moderate to maximum improvement in a structural sense.
47
Functionally, a maximum of 45.5% of patients indicated an improvement in the activity
of preparing meals while improvement in other activities too was recorded albeit to a
lesser degree. Social participation improved to the extent of 34.7% whereas income gain
was reported by 14.3% of patients. Given the results, camp approach seems to have
fulfilled its stated objectives.
4.4. POLICY SUGGESTIONS
Results indicated that “The camp approach” to reconstructive surgery brought out
significant changes in structural, functional, social and economic aspects of the life of
leprosy-afflicted persons with disabilities. Surgical procedures in leprosy patients for
correcting their deformities, as well as those for preventing disabilities or their worsening
began to be practiced systematically when leprosy became a curable disease with the use
of dapsone about 5 decades ago. But this technology was developed and carried out
mostly in the few special institution treating leprosy patient.
With the advent of more effective MDT and its widespread implementation since the
1980’s, increasing number of leprosy patients are being cured outside these institutions
and are being released from treatment. A proportion of them have grade-1 and grade-2
deformities. As the care of leprosy patient is getting progressively integrated with general
health services and in view of the paucity of adequate surgical facilities even within the
leprosy sector, it is obvious that the burden of providing the needed basic surgical care for
this category of persons will be on the general medical sector at the district levels.
To deal with this problem, ‘The Camp Approach’ to reconstructive surgery, a
comprehensive programme of disability care & surgery in which the government, medical
colleges, general hospitals, physiotherapists, trained reconstructive surgeons, anaesthetist
and full involvement of NGO’s as active partners is useful for the society. The present
48
model is therefore proposed for expanding reconstructive surgery wherever it is possible
for the entire state and the proposed model can be tried in all the major states of the India.
4.5. STRENGTHS AND LIMITATIONS OF THE STUDY
This study was conducted during limited time period for the purpose of academic
fulfilment. This, however, in no way has taken away the seriousness. There are several
advantages. First, the study tried to address the issue at hand in totality. Medically, it
measured even small structural changes possible due to surgery. It also captured the
physical functioning of the parts involved in surgical correction. Socially, it covered all
the possibilities of social interaction and tried to cover in a single scheme. Not only that,
the study methodology eliminated even the cultural differences in behaviour when
estimating the social impact of the surgery. Economic improvement was also brought out
both quantitatively and qualitatively. Second, standard tools were used wherever possible
and accuracy was obtained all the measures and scores. Third, a qualified researcher
conducted the study right from designing, data collection and analysis. Lastly, the study
came out with evidence–based policy framework for the consideration of the government
with an overall aim of improving leprosy scenario in the state and the country
The major weakness of this study is that the socio-economic results obtained cannot be
generalised, as they were obtained from a particular Socio-cultural-economic context.
Similarly, some of the results are highly opinionated and therefore, are not verifiable.
Leprosy work is not merely medical relief; it is
transforming frustration of life into joy of dedication,
personal ambition into selfless services.
Mahatma Gandhi
49
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19. Bulletin of the Leprosy Elimination Alliance, S.K. Noordeen, Chennai, S. Arvind at
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22. NLEP – Gujarat : Status Report and Action Plan 2004 – 2005, Action plan
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23. Smith WCS, Epidemiology of disability in leprosy including risk factors. Lep
review, 1992, 68 : p. 23 – 30.
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278 – 87.
25. WHO, Fact sheet (Leprosy) status report, World Health Organisation 2000.
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56: P. 386 – 95.
27. Kopparty SNM, Kurup AM. Sivaram M. Problems and coping strategies of families
having patients with and without deformities. Indian J Leprosy 1995, 67 : p. 133 –
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28. Gopal P.K. Method to identify leprosy patients needing rehabilitation. Paper
presented at the GOI-WHO workshop on “Identifying and assessing the magnitude
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29. Shrinivasan H, Noordeen SK. Rehabilitation in leprosy – A study of the nature and
extent of the problem in a rural area Journal of rehabilitation in Asia, 1967 : p. 9-14.
30. ICSW; 1967 : p. 14
31. H. Srinivasan : A lead paper Rehabilitation of leprosy affected Indian Journal of
leprosy 2003, 2 : p. 7 – 24.
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DALYS, Chennai, ICMR, Field unit memeo, 1997.
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deformity. Kottayam Indian Council of Social Science Research and Madras
Institute of Development studies, 25th
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2000 Dec; 71 (4) : P. 422 – 65.
Inter Disciplinary Research Orthodology
Workshop, 1995.
35. Salafia A : Surgical directory of India, Statewise directory of leprosy hospitals
where reconstructive surgery is performed, Wurzburg (Germany), German Leprosy
relief association, 1998 .
36. Palande D.D. The promise of surgery, its scope and limitation in leprosy, Leprosy
Review, 1988, 69, 2 : p. 168-172.
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37. WHO : International classification of Functioning, Disability and Health, World
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38. S Jesudasan et al, An analysis into trends of reconstructive surgery in Gidiyatham
taluk, A leprosy control area, Leprosy in India, 1981, 53, 2 : p.213-220
39. DD Palande, The promise of surgery, its scope and limitations in leprosy, Leprosy
Review 1998, 69 : p.168-172
40. The Classic – The Reconstruction of the hand in leprosy, Paul W Brand, Clinical
Orthopaedics and related research, 2002, 396 : p. 4-11
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updated, Plastic & Reconstructive surgery, 1981, 67, 1: p. 79 – 93
42. Turkar Ozkan et al, Surgical reconstruction of irreversible ulnar nerve paralysis in
leprosy, Lepr Rev, 2003, 74 : p.53-62
43. Sanjay Sane, Surgery of less common conditions in leprosy, Lepr Rev., 1999, 70 :
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44. Stephen H Miller et al, Surgical treatment of facial nerve involvement caused by
leprosy, American Journal of Tropical Medicine and Hygiene, 1976, 25, 3: p. 445-
448
45. Gillian Hall, A review of drop-foot corrective surgery, Lepr. Rev. (1977) 48 : p.
185-192
46. N Rosi Reddy et al, A retrospective study of foot drop correction in leprosy,
Leprosy in India, 1982, 54, 4 : p. 648-652
54
47. MW Weber et al, Results of surgical procedures for the correction of foot-drop and
lagophthalmos due to leprosy, Lepr. Rev., 1992, 63 : p. 255-262
48. W H Van Brakel, Peripheral neuropathy in leprosy and its consequences, Workshop
Proceedings, Leprosy Review, S146-S153
49. S.G. Withington et al, Assessing socio-economic factors in relation to
stigmatization, impairment status and selection of socio-economic rehabilitation: a
1 year cohort of new leprosy patients in North Bangladesh, Leprosy Review, 2000,
74 : p.120-132
50. S.N Kopparty, Problems, acceptance and social inequality: a study of the deformed
leprosy patients and their families, Leprosy Review, 1995, 66 : p. 239-249
51. Social aspects and Rehabilitation, Leprosy Review, 1990, 70 : p. 85-94
52. Peter G Nichols, Guidelines for social and economic rehabilitation, Leprosy
Review, 2000, 71 : p. 449-465
53. WH Jennings et al, A Socio-economic study of leprosy surgery cases, Leprosy in
India, 1975, 47, 3 : p. 186-189
54. V Prabhakara Rao et al, Socio-economic rehabilitation of LEPRA India –
methodology, results and application of need-based socio-economic evaluation
Leprosy Review, 2000, 71 : p. 466-471
55. M Vaz et al, The effect of leprosy-induced deformity on the nutritional status of
index cases and their household members in rural south India – a economic
perspective, European Journal of clinical nutrition, 2000, 54 : p.643-649
55
56. Kopparty SNM, Problems, acceptance and Social inequality: a study of the
deformed leprosy patients with and without deformities, 1995, Indian Journal of
Leprosy, 67: p. 133-152
57. D Varatharajan et al, Economic burden of leprosy disability and its forward linkage
effect
58. Health economics -study material
59. HJ Chum, et al, Leprosy disability in Yimbo and its economic effects, 1970, The
East African Medical Journal, 47, 7 : p. 389-394.
56
ANNEXURE 1
OBJECTIVE BASED EVALUATION OF “CAMP APPROACH”
RECONSTRUCTIVE SURGERY OF LEPROSY PERSONS IN BARODA DISTRICT, GUJARAT.
Dr. P.V. Dave
Achutamenon Center for Health Sciences Studies Sree Chitra Tirunal Institute of Medical Science and Technology Thiruvananthapuram,
Kerala [Information collected in the schedule will be kept confidential and used for research purpose only
(Informed consent received)]
INTERVIEW SCHEDULE
Date of Interview: Name of the Interviewer:
A. Personal Information
Name: Sl. No:
Village: Taluka: District:
Sex: M F Age: Caste: SC ST OBC Others
Leprosy: PB MB -ve
MB +ve
Treatment: DDS PB-MDT MB-MDT Other
Marital Status Education
unmarried 1 Illiterate 1
married 2 1-5 years of schooling 2
Widow 3 6-10 years of schooling 3
Divorcee 4 11-12 years of schooling 4
Separated 5 Any under graduate or above 5
Family Information Type of family 1 Nuclear 2 Joint 3 Extended
Size of family Adult Children
57
B. Surgery Information Surgery date: / / Initial date: / / Assessed on: / /
Post-Operative Therapy (if any):
Date of Admission: / / Date of discharge: / /
Category A: Pathological Category B: Functional Category C: Cosmetic
Surgery done for (Tick the appropriate box) Peripheral Nerves R L Primary Deformity R L Secondary Deformity R L
Ulnar Claw hand Plantar ulcer
Median Ape thumb Contracture
Radial Wrist drop Bone involvement
Lateral popliteal Foot drop Loss of Eyebrow
Posterior tibial Claw toes Cataract
Facial (Zygomatic) Lagophthalmos Depressed nose
Post Operative Complication (Tick appropriate box, by verifying the records) S. No Post-operative complication Yes No
1. Infection
2. Haematoma
3. Residual Deformity
4. Extrusion of Cartilage
5. Blindness
6. Gangrene
7. Death
C. Physical Assessment of Disability TYPE-WISE DISABILITY Only in the box and analyze according to EHF Score WHO 1998
HAND FEET FACE Before
Surgery After
Surgery Before Surgery
After Surgery Before
Surgery After
Surgery R L R L R L R L R L R L Anaesthesia Anaesthesia Anaesthesia Mobile claw hand Foot drop Corneal ulcer Fixed claw hand Claw toes Lagophthalmos Ape thumb Sole wound Facial palsy Wounds / blisters Equines / Flat foot Loss of Eyebrow Absorption of fingers Absorption of toes Depressed nose
58
EHF Score [Disability grades, WHO 1998]: (No deformity – Grade 0; Anesthesia -Grade 1; All visible Deformity-Grade 2) – Minimum Score – 0 & Maximum Score – 12.
Disability Grade Eyes Hands Feet EHF Score (Sum) Rt Lt Rt Lt Rt Lt
A. Before surgery / 12
B. After surgery / 12
Difference in EHF Score (A – B)
Duration of deformity 0 – 2 years 1 2 – 5 years 2 > 5 years 3
I. Assessment of joint range of motion (Hands) Angle is noted in Degree. S.No Angle measurement Before surgery After surgery
A. Assessment of hands
A
ctiv
e (U
nass
isted
)
Act
ive
assis
ted
(Ass
isted
)
Pass
ive
(Con
trac
ture
)
Act
ive
(Una
ssist
ed)
A
ctiv
e as
siste
d (A
ssist
ed)
Pa
ssiv
e (C
ontr
actu
re)
R L R L R L R L R L R L 1. Index finger (PIP Jt.)
2. Middle finger (PIP Jt.)
3. Ring finger (PIP Jt.)
4. Little finger (PIP Jt.)
Nor
mal
Stiff
Exte
nsio
n la
g
Nor
mal
Stiff
Exte
nsio
n la
g
R L R L R L R L R L R L 5. Thumb IP Jt.
Nor
mal
Ade
quat
e
Con
trat
ed
Nor
mal
Ade
quat
e
Con
trat
ed
R L R L R L R L R L R L 6. Thumb web
59
II. Assessment of joint range of motion (Feet) Angle is noted in Degree.
B Assessment of foot Before surgery After Surgery R L R L
1. Active dorsi-flexion of Ankle
2. Passive dorsi-flexion (KS) of Ankle
3. Passive dorsi-flexion (KB) of Ankle
III. Assessment of vision (Eyes)
C Assessment of eyes R L R L 1. Eye lid gap (in mms)
Enter ‘1’ for YES & ‘0’ for NO N
orm
al
Dim
Blin
d
Nor
mal
Dim
Blin
d
Nor
mal
Dim
Blin
d
Nor
mal
Dim
Blin
d
2. Eye vision
D. Assessment of Physical Function Activity restriction (GPAS, 1998)
Question
Before surgery After surgery
No
diff
icul
ty
Mild
diff
icul
ty
Mod
erat
e di
ffic
ulty
Seve
re d
iffic
ulty
No
diff
icul
ty
Mild
diff
icul
ty
Mod
erat
e di
ffic
ulty
Seve
re d
iffic
ulty
A. Walking 1. How difficult for you, walking outside the house is?
2. How difficult for you, climbing stairs is?
3. How difficult for you, walking uphill is?
4. How difficult for you, walking downhill is?
60
B. Sitting and getting up 5. How difficult for you, squatting is ?
6. How difficult for you, sitting with crossed legs is?
7. How difficult for you, getting up is?
C. Seeing 8. How difficult for you, recognising people from far away is?
9. How difficult for you, seeing small things at a short distance is?
D. Preparing meals 10. How difficult for you, cutting vegetables is?
11. How difficult for you, putting pots on the stove is?
12. How difficult for you, stirring food is?
13. How difficult for you, opening containers or bottles is?
E. Activities in the house 14. How difficult for you, sweeping is?
15. How difficult for you, opening a door is?
F. Activities around the house or in the fields 16. How difficult for you, opening a tap is?
17. How difficult for you, cutting grass or rice with an axe is?
18. How difficult for you, weeding grass or rice is?
19. How difficult for you, planting seedlings is?
20. How difficult for you, digging is?
21. How difficult for you, threshing rice is?
G. Looking after yourself/caring for yourself 22. How difficult for you, washing yourself is?
23. How difficult for you, washing your feet is?
61
24. How difficult for you, cutting your nails is?
25. How difficult for you, massaging your feet is?
26. How difficult for you, going to the toilet is?
27. How difficult for you, cleaning yourself after toilet is?
H. Dressing 28. How difficult for you, using buttons, hooks or pins is?
29. How difficult for you making knots or tying laces (or bows) is?
30. How difficult for you, putting on shoes or sandals is?
31. How difficult for you, putting on clothes is?
I. Eating and drinking 32. How difficult for you, eating with the hand is?
33. How difficult for you, drinking water from a container or glass is?
34. How difficult for you, peeling fruit is?
E. Assessment of Social functions (Participation Scale) Before Surgery After surgery
No Participation Scale
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
1 Do you have equal opportunity as your peers to find work? 0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
2 Do you work as hard as your peers do? (same hours, type of work etc)
0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
3 Do you contribute to the household economically in a similar way to your peers?
0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
62
No Participation Scale
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
4 Do you make visits (travel) outside your village as much as your peers do? (except for treatment) e.g. Bazaars, melas, nearby villages
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
5 Do you help other people (e.g. neighbours, friends or relatives)?
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
6 Do you take as much part in casual recreational/social activities as do your peers? (e.g. sports, chat, meetings)
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
7 Are you as socially active as your peers are? (e.g. in religious/community affairs)
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
8 Do you visit other people in the community as often as other people do?
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
9 Are you comfortable meeting new people? 0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
10 Do you have the same respect in the community as your peers? 0 0
[If sometimes, no or irrelevant] how big a problem is it for you? 1 2 3 4 1 2 3 4
11 Do you move around inside and outside the house and around the village / neighbourhood just as other people do?
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
12 In your village, do you visit all the public places/common places? (including schools, shops, offices, market and tea/coffee shops)
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
63
No Participation Scale
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
Yes
Som
e tim
es
No
Irrel
evan
t, I d
on’t
wan
t to
, don
’t w
ant t
o
No
prob
lem
Smal
l
Med
ium
Larg
e
Scor
e
13 Do you have opportunity to take care of yourself (appearance, nutrition, health, etc.) as well as your peers?
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
14 In your home, do you do household work? 0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
15 In family discussions, does your opinion count? 0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
16 In your home, do you eat with other people, including using the same utensils etc?
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
17 Do you take part in major festivals and rituals as your peers do? (e.g. weddings, funerals, religious festivals)
0
0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
18 Do you feel confident to try to learn new things? 0 0
[If sometimes, no or irrelevant] how big a problem is it to you? 1 2 3 4 1 2 3 4
TOTAL SCORE
F. Assessment of economic function a What is your approximate monthly
income (Self) Before
Deformity After Deformity
but Before surgery
After surgery
b. What is approximate monthly income (Family)
64
Please only in appropriate Column
c. What is/was your occupation? Before
deformity
After deformity but before
surgery
After surgery/now
1 Labour/Daily wage 2 Salaried 3 Farmer 4 Unemployed 5 Student 6 Professional/Business
d. What is the economic role with in household?
Before deformity After deformity but before surgery After surgery/now
Rank within the household in income earning
65
ANNEXURE – II OPERATIONAL DEFINITION OF VARIABLES
Duration of deformity:
The duration from the date of onset of first deformity until the date of interview was
calculated and recorded. The duration was grouped as 1) 0 – 2 years; 2) 2 – 5 years and
3) > 5 years.
Assessment of Joint Range of motion
The most widely accepted system of recording the range of movement (ROM) of joints is
Goniometric measurements. The range of motion of individual joints can be measured in
degrees with much greater accuracy during pre and post surgery. The change in ROM of
individual joint can be monitored by goniometeric measurements.
Goniometer:
A goniometer is a protractor with a movable arm, which can move in a complete circle.
The straight side (0 – 180o) of the Goniometer is placed in line with the proximal bone on
66
one side of the joint. The arm is moved in line with the distal bone on the other side of
the joint. The arm pointing to the angle is noted in degree.
Assessment of fingers:
The angles at the proximal inter phalangeal (PIP) joint of all four fingers (Index, Middle,
Ring & Little) of the affected hand will be measured. Three types of angles are
measured. The difference between the pre & post surgery angles will be compared.
Unassisted angle (Active)
This angle is measured at PIP joint of fingers. Patient is asked to perform lumbrical
position [Wrist in neutral position with MCP joint in 900 flexion and IP joints straight]
actively on his own. The examiner places the base of goniometer at the proximal phalanx
and the lag in PIP joint is measured and recorded.
Assisted angle (Active assisted)
This angle is measured at PIP joint of fingers. Patient is asked to perform lumbrical
position [Wrist in neutral position with MCP joint in 900 flexion and IP joints straight],
while the examiner holds the MCP joint of each finger in 900 flexion. The examiner
places the base of goniometer at the proximal phalanx and the lag in PIP joint is measured
and recorded.
Contracture angle (Passive)
This angle is measured at PIP joint of fingers. The examiner passively stretches the PIP
joint of each finger in maximum possible extension. The examiner places the base of
goniometer at the proximal phalanx and the lag in PIP joint is measured and recorded.
67
ASSESSMENT OF THUMB
Thumb IP joint
The ROM of thumb IP joint is assessed pre and post surgery and it is classified as 1)
Normal, 2) Stiff and 3) Extension lag.
1) Normal: It is termed as ‘Normal”, if the ROM of the thumb IP joint is full and
possible actively
2) Stiff: It is termed as “Stiff’, if the thumb IP joint is stiff and the patient is not able
to move the IP joint.
3) Extension lag: It is termed as “Extension lag”, if the patient is not able to extend
the IP joint of thumb, while the examiner holds the Proximal phalanx of the
thumb.
Thumb web
The measurement of thumb web is classified as 1) Normal, 2) adequate and 3) contracted.
This is usually estimated without a goniometer.
The examiner passively abduct and oppose the thumb fully. If the examiner is able to
bring the thumb perpendicular to the hand, it is termed as “Normal”. If there is slight
restriction then it is termed as adequate. If it is not possible to abduct the thumb, then it is
termed as “Contracted”.
68
Assessment of Ankle joint
This is done with foot giniometer. The protacter is fixed to the hinged boards with the
zero line parallel to the leg board. The angles between the two boards are recorded. Three
types of angles are measured.
1. Marked improvement - If the difference in the angle is more than 20.
2. Moderate improvement - If the difference in the angle is between
11 - 20.
3. Minimum improvement - If the difference in the angle is between
1 - 10.
4. No change - If the difference in the angle is zero.
Active dorsi-flexion of ankle
This is measured when the patient performs dorsi-flexion of the foot actively. The
normal dorsi-flexion of the foot is 800 to 700.
Passive dorsi-flexion (Knee Joint is Straight ) of ankle
This is measured when the examiner passively dorsi-flex the foot when the knee joint is
kept straight. The angle is recorded.
69
Passive dorsi-flexion (Knee Joint is Bent to 900) of ankle
This is measured when the examiner passively dorsi-flex the foot when the knee joint is
bent or flexed to 900. The angle is recorded.
Assessment of eyes:
Eye lid gap:
This is measured in millimeters using a regular ruler. Patient is asked to close the eyelids
tightly and the residual gap between the upper and lower eyelids is measured and
recorded.
1. Marked improvement - If the difference in the lid gap is more than 10
mm
2 Minimal improvement - If the difference in the lid gap is between 6 mm to
10 mm
3 No change - If the difference in the lid gap is zero.
Eye vision:
This is classified as 1) Normal, 2) Dim and 3) Blind.
1) It is termed as ‘normal’ if the patient has good vision and able to see the objects
clearly.
2) It is termed as “dim’, if the patient is able to identify the objects, with some
difficulty.
3) It is termed as ‘blind’, if the patient is not able to see the objects at all.
70
ASSESSMENT OF FUNCTION ACTIVITY RESTRICTION
GREEN PAUSTERS ACTIVITY SCALE - 1998
Question
Before surgery After surgery
No
diff
icul
ty
Mild
diff
icul
ty
Mod
erat
e di
ffic
ulty
Seve
re d
iffic
ulty
No
diff
icul
ty
Mild
diff
icul
ty
Mod
erat
e di
ffic
ulty
Seve
re d
iffic
ulty
A. Walking No difficulty – Able to walk normally Mild difficulty – Able to walk, but slowly Moderate difficulty – Difficulty in walking and have to limp forward Severe difficulty – Unable to walk and need a support B. Sitting and getting up No difficulty – Able to sit and get up normally Mild difficulty – Able to sit and get up, but slowly Moderate difficulty – Difficulty in sitting and getting up and have to lean forward Severe difficulty – Unable to sit and get up without a support C. Seeing No difficulty – Able to see normally Mild difficulty – Able to see, but slightly blur (Objects are not clear) Moderate difficulty – Difficulty in seeing and have to use the normal eye Severe difficulty – Unable to see any object D. Preparing meals No difficulty – Able to prepare meals normally Mild difficulty – Able to prepare meals, but at slow pace Moderate difficulty – Difficulty in preparing meals and need some assistive devise Severe difficulty – Unable to prepare meals E. Activities in the house No difficulty – Able to do all activities normally Mild difficulty – Able to do, but not safely Moderate difficulty – Difficulty in doing and need some assistance Severe difficulty – Unable to do any activities at house F. Activities around the house or in the fields No difficulty – Able to do activities around the house / fields normally Mild difficulty – Able to do, but not safely and with less efficiency Moderate difficulty – Difficulty in doing and have to use adaptations Severe difficulty – Unable to do any activities of the house and field
71
G. Looking after yourself/caring for yourself No difficulty – Able to look after myself normally Mild difficulty – Able to look after myself, but manage slowly Moderate difficulty – Difficulty in looking after myself and need someone’s help Severe difficulty – Unable to look after myself and fully dependent on others H. Dressing No difficulty – Able to dress normally Mild difficulty – Able to dress, but slightly slow Moderate difficulty – Difficulty in dressing and have to manage differently Severe difficulty – Unable to dress myself and needs someone’s assistance I. Eating and drinking No difficulty – Able to eat and drink normally Mild difficulty – Able to eat and drink, but spills all over Moderate difficulty – Difficulty in eating and drinking and need adaptation Severe difficulty – Unable to eat and drink and need someone’s help
PARTICIPATION SCALE
Response options
Not specified, answered
“I won’t tell you”, or “I forgot to ask”
Use this response when the client does not give an answer, for example when they are too
embarrassed to do so. It may also be used when the interviewer forgets, or for some other
reason does not ask the question.
YES
“There is no difficulty”
Use this response when there is no participation restriction, or a negligibly mild one.
72
Sometimes
There are problems with this sometimes or with some people
NO
There are problems with this
Irrelevant/I don’t have to/I don’t want to
The person may answer a question with ‘no’ but say that it is nevertheless irrelevant for
them. For example, they may not travel outside their village, in which case the answer is
‘no’, but it may be irrelevant for them because they have no relatives or family living
outside the village.
The person may say that they don’t travel outside their village because their children go
to the bazaar and they therefore don’t have to leave the village. This response can also be
used when a patient does not expect to be able to do this, e.g. questions about marriage
for children. This response may also be used where there is an issue due to caste, gender
etc, rather than disease. For example in a culture where women are excluded from
community leadership positions, regardless of their health status.
The person may also say that they don’t want to leave the village or have no interest in
doing so. Interviewers must note that there is a difference between a patient saying they
don’t want to because they have no interest in something, and not wanting to do
something because of fear or paranoia which is self-stigmatization.
Problem assessment
IF NO or Sometimes , the importance of the participation restriction must be assessed:
73
It is not a problem
There is a participation restriction, but it does not matter to the client either practically or
emotionally. This can include situations where the client has fully adapted. Be careful to
distinguish between this, and the situation where the client did not ever have expectations
of participating
It is a small problem (in time or intensity) (mild restriction)
There is now a participation restriction. It matters to the client either practically or
emotionally. But it is only a small problem because it doesn’t happen often or isn’t a big
difficulty.
It is a medium problem (in time or intensity) (moderate restriction)
There is now a participation restriction. It matters to the client either practically or
emotionally. It has an effect on his/her life.
It is a BIG problem
There is now a participation restriction. It matters to the client either practically or
emotionally. (S)he has not found an appropriate way of coping and it is a big problem,
which may have resulted in a major life change.
74
ANNEXURE – III (A) EXTRA TABLES
A) GENERAL CHARACTERISTICS
Table -1 DISTRIBUTION OF STUDY CASES AS PER CASTE.
Caste No. of Cases
SC 124 (44.5)
ST 40 (14.3)
OBC 31 (11.1)
Others 84 (30.1)
Total 279 (100.0)
Table - 2 TYPE OF FAMILY
Type of Family No. of persons
Nuclear 40 (14.3)
Joint 209 (74.9)
Extended 30 (10.8)
Total 279 (100.0)
75
Table -3
EDUCATIONAL STATUS OF STUDY PERSONS
Educational Status (Yrs of schooling) No. of persons
Illiterate 137 (49.1)
1-5 81 (29.0)
6-10 49 (17.6)
11-12 9 (3.2)
Graduate & above 3 (1.1)
Total 279 (100.0)
Table -4
CATEGORY OF SURGERY DONE
Treatment No. of Cases
Pathological -
Functional 271 (97.1)
Cosmetic 8 (2.9)
Total 279 (100.0)
76
Table - 5 PROFILE OF POST OPERATIVE COMPLICATIONS
Complications No. of persons (N=279)
Infection 5 (1.8)
Haematoma -
Residual Deformity -
Extrusion of Cartilage -
Blindness -
Death -
Total 5 (1.8)
Table - 6 CORRECTION OF APE THUMB DEFORMITY (N = 8)
(By Goniometer)
Disability status Range of motion – IP Joint
Before surgery After surgery
Normal 3 4
Stiff 3 2
Extension lag 2 2
8 8
77
Type of deformity corrected by re-constructive surgery (N = 57)
23
3 1 0
31
50 1
05
101520253035
Claw han
d
Ape thumb
Foot dro
p
Lagophtal
mos
RT LT
64 type of reconstructive surgeries were performed in 57 leprosy patients.
Table - 7 THUMB WEB (N = 8)
Disability status RANGE OF MOTION – WEB SPACE
Before surgery After surgery
Normal 5 4
Adequate 2 3
Contracted 1 1
Total 8 8
78
ANNEXURE – III (B)
SOCIAL PARTICIPATION (ONE TABLE FOR EACH QUESTION)
PARTICIPATION SCALE
TABLE – 1 DO YOU HAVE EQUAL OPPORTUNITY AS YOURS PEERS TO FIND WORK
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 138 3 2 1 3 147
(52.7)
Problem but fully adopted
8 18 - 1 - 27 (9.7)
Small problem 11 3 10 0 1 25 (9.0)
Medium Problem 16 4 11 16 2 49 (17.6)
Large Problem 8 - 3 1 19 31 (11.1)
Total 181 (64.9) 28 (10.0) 26 (9.3) 19 (6.8) 25 (9.0) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001
23.3% improved, 72.0% remained same, 4.7% worsened.
TABLE – 2 DO YOUR WORK AS HARD AS YOURS PEERS DO?
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 103 4 - 1 2 110
(39.4)
Problem but fully adopted
2 14 1 7 - 18 (6.5)
Small problem 22 6 24 1 2 55 (19.7)
Medium Problem 23 3 13 16 - 55 (19.7)
Large Problem 7 - 4 7 23 41 (14.7)
Total 157 (56.3) 27 (9.7) 42 (15.1) 26 (9.3) 27 (9.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 31.2% improved, 64.5% remained same, 4.3% worsened.
79
TABLE – 3 DO YOU CONTRIBUTE TO THE HOUSEHOLD ECONOMICALLY IN A
SIMILAR WAY TO YOUR PEERS?
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 162 3 1 1 3 170
(60.9)
Problem but fully adopted
7 18 4 - - 29 (10.4)
Small problem 15 5 7 - 1 28 (10.0)
Medium Problem 11 2 4 8 1 26 (9.3)
Large Problem 10 - - 3 13 26 (9.3)
Total 205 (73.5) 28 (10.0) 16 (5.7) 12 (4.3) 18 (6.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 20.4% improved, 74.6% remained same, 5.0% worsened.
TABLE – 4 DO YOU MAKE VISITS (TRAVEL) OUTSIDE YOUR VILLAGE AS MUCH AS
YOUR PEERS DO? (EXCEPT FOR TREATMENT) e.g., MEALS, NEARBY VILLAGE.
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 224 2 - - 1 227
(81.4)
Problem but fully adopted
5 11 - - - 16 (5.7)
Small problem 6 1 3 1 - 11 (3.9)
Medium Problem 6 2 2 1 - 11 (3.9)
Large Problem 8 - - - 6 14 (5.0)
Total 249 (89.2) 16 (5.7) 5 (1.8) 2 (0.7) 7 (2.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 10.1% improved, 87.8% remained same, 1.4% worsened.
80
TABLE – 5
DO YOU HELP OTHER PEOPLE (eg., NIGHBOURS, FRIENDS & RELATIVES
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 212 2 1 - - 215
(77.1)
Problem but fully adopted
7 12 - - - 19 (6.8)
Small problem 8 1 7 - 1 17 (6.1)
Medium Problem 9 1 2 3 1 16 (5.7)
Large Problem 4 - - - 8 12 (4.3)
Total 240 (86.0) 16 (5.7) 10 (3.6) 3 (1.1) 10 (3.6) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 11.5% improved, 86.7% remained same, 1.7% worsened.
TABLE – 6 DO YOU TAKE AS MUCH PART IN CASUAL RECREATIONAL / SOCIAL
ACTIVITIES AS DO YOUR PEERS (eg., SPORTS, CHAT, MEETING)
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 210 1 1 - - 212
(76.0)
Problem but fully adopted
7 25 - - - 32 (11.5)
Small problem 4 2 6 - - 12 (4.3)
Medium Problem 6 1 - 6 - 13 (4.7)
Large Problem 6 - - - 4 10 (3.6)
Total 233 (83.5) 29 (10.4) 7 (2.5) 6 (2.2) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 9.3% improved, 90.0% remained same, 0.7% worsened.
81
TABLE – 7 ARE YOU AS SOCIALLY ACTIVE AS YOUR PEERS ARE ?.
(In Religious / Community affairs)
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 213 2 - - - 215
(77.1)
Problem but fully adopted
9 22 1 - - 32 (11.5)
Small problem 2 - 6 - - 8 (2.9)
Medium Problem 7 1 - 4 - 12 (4.3)
Large Problem 6 - - - 6 12 (4.3)
Total 237 (84.9) 25 (9.0) 7 (2.5) 4 (1.4) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 9.0% improved, 90.0% remained same, 1.0% worsened.
TABLE – 8 DO YOU VISIT OTHER PEOPLE IN THE COMMUNITY AS OFTEN AS
OTHER PEOPLE DO?
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 221 1 - - - 222
(79.6)
Problem but fully adopted
9 18 - - - 27 (9.7)
Small problem 6 - 2 1 - 9 (3.2)
Medium Problem 8 - 2 2 - 12 (4.3)
Large Problem 5 - - - 4 9 (3.2)
Total 249 (89.2) 19 (6.8) 4 (1.4) 3 (1.1) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 10.8% improved, 88.5% remained same, 0.7% worsened.
82
TABLE – 9 ARE YOU COMFORTABLE MEETING NEW PEOPLE?
BE
FOR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 229 1 - - - 230
(82.4)
Problem but fully adopted
6 7 1 - - 14 (5.0)
Small problem 7 2 2 1 - 12 (4.3)
Medium Problem 8 3 2 2 - 15 (5.4)
Large Problem 6 - - - 2 8 (2.9)
Total 256 (91.8) 13 (4.7) 5 (1.8) 3 (1.1) 2 (0.7) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 12.2% improved, 86.7% remained same, 1.1% worsened.
TABLE – 10 DO YOU HAVE THE SOME RESPECT IN THE COMMUNITY AS YOUR
PEER?
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 238 1 - - - 239
(85.7)
Problem but fully adopted
6 7 - - - 13 (4.7)
Small problem 2 2 1 - - 5 (1.8)
Medium Problem 7 2 - 7 - 16 (5.7)
Large Problem 2 - - - 4 6 (2.2)
Total 255 (91.4) 12 (4.3) 1 (0.4) 7 (2.5) 4 (1.4) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.5% improved, 92.1% remained same, 0.4% worsened.
83
TABLE – 11 DO YOU MOVE AROUND INSIDE AND OUTSIDE THE HOUSE AND AROUND
THE VILLAGE / NEIGHBOURHOOD JUST AS OTHER PEOPLE DO?
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 240 1 - - - 241
(86.41)
Problem but fully adopted
8 6 - - - 14 (5.0)
Small problem 4 2 4 - - 10 (3.6)
Medium Problem 2 1 - 1 - 4 (1.4)
Large Problem 5 - - - 5 10 (3.6)
Total 259 (92.8) 10 (3.6) 4 (1.4) 1 (0.4) 5 (1.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.8% improved, 91.8% remained same, 0.4% worsened.
TABLE – 12 IN YOUR VILLAGE, DO YOU VISIT ALL THE PUBLIC PLACES / COMMON PLACES? (INCLUDING SCHOOLS, SHOPS, OFFICES, MARKET AND TEA /
OFFICE SHOPE)
BE
FOR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 225 2 - - - 227
(81.4)
Problem but fully adopted
7 19 - - - 26 (9.3)
Small problem 5 2 3 - - 10 (3.6)
Medium Problem 5 1 - 3 - 9 (3.2)
Large Problem 3 - 1 - 3 7 (2.5)
Total 245 (87.8) 24 (8.6) 4 (1.4) 3 (1.1) 3 (1.1) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 8.6% improved, 90.7% remained same, 0.7% worsened.
84
TABLE – 13 DO YOU HAVE OPPORTUNITY TO TAKE CARE OF YOURSELF
(APPEARANCE, NUTRITION, HEALTH etc) AS WELL AS YOUR PEERS?
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 237 4 - 2 1 244
(87.5)
Problem but fully adopted
8 5 - - - 13 (4.7)
Small problem 6 - 1 - - 7 (2.5)
Medium Problem 2 - - 2 - 4 (1.4)
Large Problem 4 - - 1 6 11 (3.9)
Total 257 (92.1) 9 (3.2) 1 (0.4) 5 (1.8) 7 (2.5) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 7.5% improved, 90.0% remained same, 2.5% worsened.
TABLE – 14 IN YOUR HOME, DO YOU DO HOSEHOLD WORK?
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 187 1 3 - - 192
(68.8)
Problem but fully adopted
6 27 - - - 33 (11.8)
Small problem 13 1 7 1 - 22 (7.9)
Medium Problem 8 - 3 4 - 15 (5.4)
Large Problem 7 1 - - 9 17 (6.1)
Total 221 (79.2) 30 (10.8) 13 (4.7) 5 (1.8) 10 (3.6) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 14.0% improved, 83.9% remained same, 2.1% worsened.
85
TABLE – 15 IN FAMILY DISCUSSION, DOES YOUR OPINION COUNT?
BE
FOR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 254 1 - - - 255
(91.4)
Problem but fully adopted
8 3 - - - 11 (3.9)
Small problem 2 - - - - 2 (0.7)
Medium Problem 2 - - 1 - 3 (1.1)
Large Problem 2 - - - 6 8 (2.9)
Total 268 (96.1) 4 (1.4) - 1 (0.4) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 5.0% improved, 94.6% remained same, 0.4% worsened.
TABLE – 16 IN YOUR HOME, DO YOU EAT WITH OTHER PEOPLE INCLUDING USING
THE SAME UTENSILS Etc?
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 251 2 - - - 253
(90.7)
Problem but fully adopted
7 4 - - - 11 (3.9)
Small problem - 3 - 1 1 5 (1.8)
Medium Problem 2 - - 1 - 3 (1.1)
Large Problem 2 - - - 5 7 (2.5)
Total 262 (93.9) 9 (3.2) - 2 (0.7) 6 (2.2) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 5.0% improved, 93.5% remained same, 1.5% worsened.
86
TABLE – 17 DO YOU TAKE PART IN MAJOR FESTIVALS AND RITUALS AS YOUR
PEERS DO? (eg. WEDDING, FUNERALS, RELIGIOUS FESTIVALS)
BEFO
RE
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 234 1 - - - 235
(84.2)
Problem but fully adopted
5 11 - - - 16 (5.7)
Small problem 4 1 2 - - 7 (2.5)
Medium Problem 8 - 1 3 - 12 (4.3)
Large Problem 4 - - - 5 9 (3.2)
Total 255 (91.4) 13 (4.7) 3 (1.1) 3 (1.1) 5 (1.8) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 8.2% improved, 91.4% remained same, 0.4% worsened.
TABLE – 18 DO YOU FEEL CONFIDENT TO TRY TO LEARN NEW THINGS?
BEF
OR
E
AFTER
No Problem
Problem but fully adopted
Small problem
Medium Problem
Large Problem Total
No Problem 186 2 2 2 3 195
(69.9)
Problem but fully adopted
4 27 - - - 31 (11.1)
Small problem 14 5 2 - - 21 (7.5)
Medium Problem 12 2 1 6 - 21 (7.5)
Large Problem 2 - - - 9 11 (3.9)
Total 218 (78.1) 36 (12.9) 5 (1.8) 8 (2.9) 12 (4.3) 279 (100) By Wilcoxon Signed Ranks Test P < 0.001 14.4% improved, 82.4% remained same, 3.2% worsened.