1. Transitioning from Child-Centered to Adult Oriented Medical Care Barth Syndrome Family Meeting Orlando, FL July 11, 2004 John G. Reiss, PhD Chief, Div Policy and Program Affairs, Institute Associate Professor of Pediatrics, University of Florida jgr@ichp.ufl.edujgr@ichp.ufl.edu www.ichp.ufl.edu

2. 2 What is Health Care Transition ? The purposeful planned movement of adolescents and young adults with chronic physical and medical conditions from child- centered to adult oriented health care system Blum et al. Transition from child-centered to adult health-care: Systems for adolescents with chronic conditions. J of Adol Health 1993;14:570-576.

3. 3 Current Federal Policy: Youth with SHCN will receive services to make necessary transitions to adult life:  Health  Work  Independence Maternal and Child Health Bureau http://mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm President’s New Freedom Initiative http://www.hhs.gov/newfreedom/ http://www.hhs.gov/newfreedom/

4. 4 What we have learned about HCT  Easier said than done  HCT is a developmental process  Differences between pediatric and adult medical systems make a difference  Interpersonal relationships are critical

5. 5 HCT is a Developmental Process  3 stages of Health Care Transition  Envisioning a Future  Age of Responsibility  Age of Transition

6. 6 Envisioning a Future  Recognize that the child will have a future  Start early - at time of diagnosis  What hopes & dreams do you have for your child?  What does he want to do when he grows up?  What are the steps toward making that vision real?

7. 7 Age of Responsibility  Development of independent skills to live with a SHCN & its treatment  Begin skill development & promote personal and health independence on a daily basis  Gain knowledge of SHCN  Learn about medication

8. 8 Age of Responsibility  Develop interaction and communication skills with health care providers Use health care visits to practice:  Providing health information  Asking & answering questions  Giving assent  Spending some time alone with providers

9. 9 Age of Responsibility Help the child/young adult to understand independence (interdependence) within the context of their goals, expectations, strengths & needs

10. 10 Age of Transition  Determine what type of ongoing primary & specialty health care will be needed  Determine who is best to provide care  If college is next step, what interim health management strategies are necessary?  Work with pediatric provider to identify new adult oriented providers

11. 11 Age of Transition  Learn to handle emergencies independently  Determine ways to pay for health care in the future (anticipate changes in coverage)  Develop new independent relationship with health care providers  Address privacy/ confidentiality issues ( @ 18)

12. 12 Medical Systems Medical Subcultures: Pediatric and adult oriented medicine have different approaches to health care

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14. 14 Pediatric systems Multidisciplinary High level of nurse and staff involvement Developmentally oriented (school & life progress) Family-focused and flexible Maternal/paternal; non-judgmental Warm, optimistic and interpersonally oriented Informal and relaxed Involves parental direction and consent

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16. 16 Adult systems Provided by single physician Minimal involvement of nurses and staff Patient-focused Business-like, formal and judgmental Investigational Focuses on disease (not person) Focus on diet, exercise, compliance Requires patient to be autonomous and to function independently

17. 17 Medical Systems  Differences in treatment spaces and treatment protocols  Use of developmental approach  Clinic focused vs. specialty practice  Differences in training, knowledge and experience of practitioners

18. 18  Differences in expectations for patients (Family focus vs. autonomy)  Adult providers may not respect medical knowledge and expertise of youth & family  Pediatric providers may distrust adult providers’ knowledge of chronic conditions & commitment Medical Systems

19. 19 Promising Practices  Increase awareness that adult oriented care will probably be different  Privacy laws  Focus on YA, changing role for family  Prepare YA and family for differences  Discuss treatment expectations as part of the process of finding a new provider

20. 20 Pediatric & Family/Child Relationships  Often long standing  Involve “life saving” & other emotionally laden experiences  Evolved mutual trust  Respect for providers knowledge  Recognition of family/patient expertise  “Negotiated” priorities & treatment regimen

21. 21 Pediatric & Family/Child Relationships  More than just a “professional-client”  Family is the “unit of care”  Built on developmental & “whole child” approach

22. 22 Relationship Issues  Families forget what it took to develop effective relationship with pediatric providers  Young adults and families are unprepared for process, content & “style” of adult care  Family, YA & providers have “undisclosed expectations” that color their experience of the health care relationship

23. 23 Psychosocial Risks Transfer is experienced as punishment or rejection Transfer causes feelings of grief and loss Loss of formal and informal social supports for youth and their families Loss of peer group Young adults feels overwhelmed with new responsibilities of medical decision making, self-care, self-monitoring, self-advocacy etc. Parents feel alienated

24. 24 Therapeutic Approach to Transition  Plan at least six months ahead  Reframe termination  “Graduating from pediatric care”  Commencement (starting a new phase)  Review & document youth’s gain in knowledge, skills & expertise (self -assessment)  Share feelings

25. 25 Therapeutic Approach to Transition (Provider Responsibilities)  Validate gains & accomplishments  Empower youth & family  Reaffirm future goals and objectives  Mutually acknowledge & address feelings associated with loss and change  Renegotiate relationships  Lay the foundation for positive new health care relationships

26. 26 Therapeutic Transition  Negotiate specifics of desired ongoing pediatric involvement after termination  Gets reports on medical care & health status  Is consulted by adult provider about medical advances & changes in treatment plan  Is available to youth and/or family as “friend of the family”

27. 27 Factors that Promote Transition Success Have a future orientation Start transition process early Build personal & medical independence (interdependence) Plan for the future

28. 28 Developing a Transition Plan

29. 29 Developing a Transition Plan- Preliminary Questions  What stage is the child/young adult (YA) and family in the transition process?  What level of independence can the child/YA achieve both cognitively and physically?  What are the child/YA & family’s goals for future independence and HCT?  What are your goals for the child/YA & family?

30. 30 Transition Plan: Key Questions  Source of continuing insurance coverage?  What does it take to keep child/YA healthy?  What skills and/or knowledge are needed for interdependence and health?  What is child/young adult responsible for now?  What does child/young adult need to learn?  What tasks will be addressed but delegated to others?

31. 31 More Health Care Transition “Promising Practices”  Encourage pediatric providers to develop adult referral networks  Get training (family, YA, professionals)  Look for and use support groups and support activities (talking to other parents or young adults was frequently suggested)

32. 32 Promising Practices  Focus on preventative health strategies  Keep a medical journal (personal health information). Youth can become responsible for updating journal.  Create “medical passport” (health & related information) for new providers (Collaborative - MD, Parent, Child)

33. 33 Promising Practices  If guardianship is an issue complete this before the young adult’s 18th birthday  Maintain high expectations of young adults  Involve Independent Living Centers

34. 34 http://hctransitions.ichp.edu