1. COMPREHENSIVE CARE AND THE ROLE OF THE NURSE Nairobi, Kenya June 26, 2013

2. 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

3. 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

4. COMPREHENSIVE CARE MODEL Patient Hematologist Physical Therapists Nurses Dentists Psychosocial Workers Laboratory Technicians Orthopedists

5. COMPREHENSIVE CARE Addresses the whole person/family Collaborative Coordinated Based on education Instills advocacy Encourages adherence Improves HRQoL

6. HISTORICAL PERSPECTIVE Based on integrative public health approach 1 Successful public health program 2-4 –Improved health for patients –Reduced healthcare resources Effected change in care for patients 5,6 1 Ludlam CA. Textbook of Haemophilia Malden. MA, USA: Blackwell, 2005: 350-365. 2 Manco-Johnson MJ, et al. Semin Thromb Hemost. 2003; 29: 585-594. 3 Soucie JM, et al. Blood. 2004; 103: 2467-2473. 4 Steen Carlsson K, et al. Hemophilia. 2003; 9: 555-566. 5 Hoots WK. Current Hematology Reports. 2003; 2: 395-401. 6 Evatt BL. Haemophilia. 2006; 12: 13-21.

7. HISTORICAL PERSPECTIVE (CONT’D) First HTCs originated in UK 1940s 1 Other countries soon followed – France, US, Australia, Sweden, Japan, Italy, Israel Has become mainstay for treatment of patients with hemophilia 2 Developing countries with HTCs report improved survival 3 Recommended as the model of care by WFH, WHO 4 1 Biggs R. J R Coll Physicians Lond. 1969; 3: 151-160. 2 Hoots WK. Current Hematology Reports. 2003; 2: 395-401. 3 Chuansumrit A, et al. Haemophilia. 2004; 10: 542-549. 4 WFH Fact sheet, Fact-3.

8. HISTORICAL PERSPECTIVE (CONT’D) Benefits of comprehensive care: 5-year study in US 1 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

9. 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.

10. IMPACT OF HEMOPHILIA TREATMENT CENTRES (HTCs) CharacteristicsHTC (%)Non-HTC (%)P Severity Mild21.852.8<.001 Moderate24.226.7 Severe54.020.5 Inhibitors 6.02.3<.001 Liver disease2.30.7.002 HIV infection31.117.1<.001 AIDS8.25.9.02 Soucie JM, et al. Blood. 2000; 96(2): 437-442.

11. 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, 2003 Soucie JM, et al. Blood. 2000; 96(2): 437-442

12. THE MULTIDISCIPLINARY TEAM Physicians Hematologist* Nurse* Rheumatologist/Orthopedist Pain management specialist Infectious disease specialist Hepatologist Family doctor/Geneticist Dentist/Dental hygienist* Physiotherapist* Social Worker* Laboratory technologists/Specialty coagulation lab/Blood bank/Pharmacy* *Core team members

13. FAMILY-CENTERED CARE AND HTCs HTC multidisciplinary teams work within a framework of family-centered care Pivotal role of family is recognized and respected Families are supported in traditional roles of decision making and care-giving Families’ individual styles and strengths are valued and efforts made to minimize lifestyle disruptions Approach 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 Program www.partnersprn.org

14. 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

15. SUMMARY Comprehensive care is an effective approach to treating persons with bleeding disorders HTCs are optimal at providing comprehensive care A number of specially-trained and experienced staff are required to care for patients in HTCs Family-centered care is a form of comprehensive care that HTCs may use

16. THE ROLE OF THE NURSE IN HEMOPHILIA CARE

17. CHANGING ROLES OF NURSES Varied roles due to differences in: Backgrounds Culture Geography Access to health care Availability of factor replacement products “Systems of Care” −Insurance −Home care services

18. CURRENT NURSING ROLES Direct care Communication Teaching Counseling History taking and assessment Advocacy Assist in behavior change Leadership

19. 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.”

20. 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

21. 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

22. 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

23. 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

24. HEMOPHILIA NURSING: COORDINATION OF THE TEAM The HTC nurse’s role is to: Collaborate with medical director in development and implementation of treatment guidelines Distribute information to: −Patients and families −HTC staff −Hospital staff −Community-based medical providers Warrier et al, Journal of Pediatric Hematology/Oncology, 1997

25. 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

26. 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

27. ADDITIONAL NURSING RESPONSIBILITIES (CONT’D) Factor concentrates Monitor storage in HTC (temperature of refrigerator, alarms, etc.) Communicate with pharmacy or blood bank to ensure adequate supply of all appropriate factor concentrates Act as resource to hospital staff about reconstitution devices, dosing, and reconstitution and administration of factor concentrates

28. TREATMENT SUCCESS: THE NURSE’S ROLE Include patient/family in plan development Assess plan Assess family dynamics and skills Provide clear, written plan and schedule Monitor progress and provide ongoing support Review records for patterns, problems, progress

29. 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

30. 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

31. WFH RESOURCES The Structure and Functions of Comprehensive Hemophilia Treatment Centres Economic Benefits of Comprehensive Hemophilia Care Guidelines for the Management of Hemophilia, 2 nd ed. Hemophilia in Pictures Educator’s Guide Visit the Publications Library at www.wfh.org/publications to download free copies www.wfh.org/publications