COMPREHENSIVE CARE AND THE ROLE OF THE NURSE

Nairobi, Kenya

June 26, 2013

OBJECTIVES

• Define comprehensive care• Outline the historical perspective• Discuss success of comprehensive care• List personnel included in comprehensive care team• Examine the roles of the nurse in hemophilia care

COMPREHENSIVE CARE

Comprehensive care includes several medical team members (hematologist, nurse, physical therapist, social worker, and a dental professional to name a few) working in collaboration

with the patient and family to minimize the effects of hemophilia using prevention strategies and enlisting community support, while maximizing quality of life

COMPREHENSIVE CARE MODEL

Patient

Hematologist

Physical Therapists

Nurses

DentistsPsychosocial Workers

Laboratory Technicians

Orthopedists

COMPREHENSIVE CARE

• Addresses the whole person/family

• Collaborative• Coordinated• Based on education• Instills advocacy• Encourages adherence• Improves HRQoL

HISTORICAL PERSPECTIVE

• Based on integrative public health approach1

• Successful public health program2-4

– Improved health for patients– Reduced healthcare resources

• Effected change in care for patients5,6

1Ludlam CA. Textbook of Haemophilia Malden. MA, USA: Blackwell, 2005: 350-365.2Manco-Johnson MJ, et al. Semin Thromb Hemost. 2003; 29: 585-594.3Soucie JM, et al. Blood. 2004; 103: 2467-2473.4Steen Carlsson K, et al. Hemophilia. 2003; 9: 555-566.5Hoots WK. Current Hematology Reports. 2003; 2: 395-401.6Evatt BL. Haemophilia. 2006; 12: 13-21.

HISTORICAL PERSPECTIVE (CONT’D)

• First HTCs originated in UK 1940s1

• Other countries soon followed – France, US, Australia, Sweden, Japan, Italy, Israel

• Has become mainstay for treatment of patients with hemophilia2

• Developing countries with HTCs report improved survival3

• Recommended as the model of care by WFH, WHO4

1Biggs R. J R Coll Physicians Lond. 1969; 3: 151-160.2Hoots WK. Current Hematology Reports. 2003; 2: 395-401.3Chuansumrit A, et al. Haemophilia. 2004; 10: 542-549.4WFH Fact sheet, Fact-3.

HISTORICAL PERSPECTIVE (CONT’D)

Benefits of comprehensive care: 5-year study in US1

• Federal funding established 1975 (PL 9463)2

• 11/22 comprehensive HTCs reported

• Geographically distributed

• Minimum services provided: Coag lab, blood bank, multidisciplinary healthcare team, formal affiliations with other services, training in home and self-infusion

• Standardized data collection form used

• Analyzed healthcare outcomes and cost

Results of 5-year study: Report generated in 1981• 2,112 patients seen in the 11 centers reporting; increased to

4,742 at end of study• 514 patients on self-infusion initially versus 2,001 in 1981• 36% of patients unemployed prior to HTC; just 12.8% four years

later (one HTC had <7%; equal to that of healthy persons in 1981)

• # days lost from work or school dropped from 14.5/yr (9.4 inpatient) to 4.3/yr (1.8 inpatient)

• Hospital admissions decreased from 1.9/yr to 0.26/yr• Insurance coverage increased to 93% from 74% prior to funding• Cost of care/pt/yr dropped from $15,800 to $5,932

HISTORICAL PERSPECTIVE (CONT’D)

Smith PS and Levine PH. Am J Public Health. 1984; 74: 616-617.

IMPACT OF HEMOPHILIA TREATMENT CENTRES (HTCs)

Characteristics HTC (%) Non-HTC (%) PSeverity

Mild 21.8 52.8 <.001

Moderate 24.2 26.7

Severe 54.0 20.5

Inhibitors 6.0 2.3 <.001

Liver disease 2.3 0.7 .002

HIV infection 31.1 17.1 <.001

AIDS 8.2 5.9 .02

Soucie JM, et al. Blood. 2000; 96(2): 437-442.

IMPACT OF HTCs (CONT’D)

Mortality decreased 40% in patients using a comprehensive hemophilia treatment center (HTC)

“The finding that HTCs have a significant effect on reducing mortality in patients with hemophilia supports the effectiveness of such centers in providing specialized preventative care.”

Paisley, Haemophilia, 2003Soucie JM, et al. Blood. 2000; 96(2): 437-442

THE MULTIDISCIPLINARY TEAM

PhysiciansHematologist*Nurse*Rheumatologist/OrthopedistPain management specialistInfectious disease specialistHepatologistFamily doctor/GeneticistDentist/Dental hygienist*Physiotherapist*Social Worker*Laboratory technologists/Specialty coagulation lab/Blood

bank/Pharmacy**Core team members

FAMILY-CENTERED CARE AND HTCs

HTC multidisciplinary teams work within a framework of family-centered carePivotal role of family is recognized and respectedFamilies are supported in traditional roles of decision making and care-givingFamilies’ individual styles and strengths are valued and efforts made to minimize lifestyle disruptionsApproach requires ongoing coordination of care and communication with community based medical and social service providers and agencies

Slide courtesy of Partners in Bleeding Disorders Education Programwww.partnersprn.org

GOAL OF CARE FOR THE PERSON WITH HEMOPHILIA

Our goals as healthcare providers are:to provide the best possible care available to the person with hemophilia to educate the person with hemophilia to enable him to live as normal and productive a life as possible

Persons with hemophilia are normal people in an abnormal situation

SUMMARY

Comprehensive care is an effective approach to treating persons with bleeding disordersHTCs are optimal at providing comprehensive careA number of specially-trained and experienced staff are required to care for patients in HTCsFamily-centered care is a form of comprehensive care that HTCs may use

THE ROLE OF THE NURSE IN HEMOPHILIA CARE

CHANGING ROLES OF NURSES

Varied roles due to differences in:BackgroundsCultureGeographyAccess to health careAvailability of factor replacement products“Systems of Care”

− Insurance− Home care services

CURRENT NURSING ROLES

Direct careCommunicationTeachingCounselingHistory taking and assessmentAdvocacyAssist in behavior changeLeadership

HISTORICAL PERSPECTIVE IN NURSING PRACTICE

Florence Nightingale (1860) defined nursing as “the act of utilizing the environment of the patient to assist him in his recovery.”

HEMOPHILIA NURSING

Traditional roles• Treat bleeding episodes• Teach self-infusion

Expanded roles• History taking• Assessment of bleeding episodes• Participate in treatment decisions• Provide more independent follow-up• Coordinate total care

HEMOPHILIA NURSING: EDUCATION

• Teaching patients and families− Help prevent bleeding− Educate about treatment choices− Build skills to assess and treat at home

• Teaching other nurses and physicians• Teaching school staff and employers

HEMOPHILIA NURSING: PATIENT/FAMILY REVIEW

Review of interval activities and interventions:• Effective dose? Activities? Response as expected?

Splints, other measures used? Physician recommendations followed?

Education/review of plan of care• Review dose• Review product• Reinforce early treatment for bleeding• Remind family to call with questions/concerns• Educate community providers

An accurate, detailed history and assessment of patients for bleeding episodes and trauma is essential for determining appropriate care:

1. What are the symptoms?2. How long have the symptoms been present?3. What treatment was given and when?4. Was there an injury or trauma?5. Did a similar problem occur in the past?6. How was that problem treated?7. Did that treatment resolve the issue?

The process is continuous from first notification of event to follow-up

HEMOPHILIA NURSING: HISTORY AND ASSESSMENT

HEMOPHILIA NURSING: COORDINATION OF THE TEAM

The HTC nurse’s role is to:Collaborate with medical director in development and implementation of treatment guidelinesDistribute information to:

− Patients and families− HTC staff− Hospital staff− Community-based medical providers

Warrier et al, Journal of Pediatric Hematology/Oncology, 1997

HEMOPHILIA NURSING: RESEARCH

Data collection• Registry of patients• Treatment records• Surveillance of laboratory values

– Individual patients– Aggregate data for patient population

Specimen collection/processing

Warrier et al, Journal of Pediatric Hematology/Oncology, 1997

ADDITIONAL NURSING RESPONSIBILITIES

Develop/follow laboratory study protocols• Order routine lab studies for patients• Record labs/flow sheets/treatment logs

Record keeping• Routine visit forms• Acute visit forms

Research• Coordinate clinical research protocols

ADDITIONAL NURSING RESPONSIBILITIES (CONT’D)

Factor concentratesMonitor storage in HTC (temperature of refrigerator, alarms, etc.)Communicate with pharmacy or blood bank to ensure adequate supply of all appropriate factor concentratesAct as resource to hospital staff about reconstitution devices, dosing, and reconstitution and administration of factor concentrates

TREATMENT SUCCESS: THE NURSE’S ROLE

Include patient/family in plan developmentAssess planAssess family dynamics and skillsProvide clear, written plan and scheduleMonitor progress and provide ongoing supportReview records for patterns, problems, progress

TREATMENT SUCCESS: THE NURSE’S ROLE (CONT’D)

• Acknowledge difficulty of plan• Initiate follow-up and review of progress• Ask about potential challenges; listen to response; collaborate

on strategies• Adjust plan to fit lifestyle of patient• Provide thorough education and skills training• Review skills• Maintain professional and supportive role

SUMMARY

• Nurses are key members of the team• They provide the link between the patient and the

medical providers• They have an important role in:

− Education− Treatment− Research− Support of patient and families to learn and live

with hemophilia

WFH RESOURCES

• The Structure and Functions of Comprehensive Hemophilia Treatment Centres

• Economic Benefits of Comprehensive Hemophilia Care

• Guidelines for the Management of Hemophilia, 2nd ed.

• Hemophilia in Pictures Educator’s Guide

Visit the Publications Library at www.wfh.org/publications to download free copies