Supporting Health Care Transitions from

1. Supporting Health Care Transitions from • Pediatric to Adult Care — Opening Doors to a Healthy Future • The National Health Care Transition Center – Got Transition • Project Access Grantees Teleconference • January 3, 2012 • W. Carl Cooley, MD • Got Transition – Co-Director • Chief Medical Officer, Crotched Mountain Foundation • Adjunct Professor of Pediatrics, Dartmouth Medical School

2. Disclosure “I have no relevant financial relationships with the manufacturer(s) of any commercial product(s) and/or provider(s) of commercial services discussed in this CME activity.”

3. Learning Objectives 1) Describe the status of the health care transition from pediatric to adult care from the perspective of youth, families, and health care professionals. 2) Define the six core elements of health care transition developed for pediatric and adult office settings and mirroring the AAP/AAFP/ACP clinical report on health care transition. 3) Be aware of the work of Got Transition - The National Health Care Transition Center and resources available for practices, youth and families. Supported by cooperative agreement U39MC18176 HRSA/USMCHB

5. Health Care Transition Overview • Every year 500,000+ American youth with special health care needs leave the pediatric health care system and “graduate” into the adult system • Some are able to independently negotiate their way into and around the adult health care system… • But many need different levels of support as they navigate the chasm between pediatric and adult health care

6. What do the data tell us? How prepared are youth for managing their care in the adult health care system?

7. Internal medicine nephrologists (N=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center 2006

8. What do the data tell us? What is the perspective of families on health care transition? National Survey 2005-06 of families of CYSHCN

9. 2005-6 National Health Survey* • National telephone survey of 40,804 families with youth with SHCN under the age of 18 found the following results: • 48.8% of families with youth with SHCN ages 12-17 years stated their youth received the services necessary to make appropriate transitions to adult health care, work and independence. Over 50% did not. • Regarding actions by their primary care providers: • 50.7 % talked with them about having their child eventually see health care providers who treat adults • 46.2% talked with them about the health care needs as their child becomes an adult • 21.3% discussed with them how to obtain or keep some type of health insurance coverage as their child becomes an adult • 48.7% encouraged their youth to learn about their health and medications

10. What do the data tell us? What do adult providers say they want to assist them in receiving youth with special health care needs?

11. Survey of NH Adult Health Care Providers (2008) Who: 180 responses: 81% family physician, 9% internist, 8% NP, 2% med-peds Communication: 46% rarely/never received transition summary or call from pediatric PCP 48% young adult experienced gap in care Barriers: time, staffing, reimbursement issues inadequate support from specialists Comfort level: More - asthma, hypertension, mental health, diabetes Less - CF, chromosome/met disorders, autism, technology dependent What would help: 95% written summary and support from specialists 91% want to speak with prior provider 84% written educational information about condition When transfer: 78% between 18-21 years

12. What do the data tell us? What do pediatricians say they are doing about health care transition? 2008 AAP Periodic Survey #71

13. AAP Periodic Survey #71 2008 Results* • 47% Assist with a referral to family or internal medicine • 32% Assist with finding a primary care physicain • 45% Refer to adult specialists • 33% Discuss consent/confidentially prior to age 18 • 27% Create a portable medical record summary • 23% Offer education and consultative support to adult providers • 19% Assist in identifying insurance options after age 18 • 12% Create an individualized health care transition plan * For all or most of their adolescents

14. Barriers to transition care for pediatricians • 88% Lack of their knowledge of community resources • 85% Fragmentation of adult health care • 84% Lack of adolescent knowledge about health condition and skills to self advocate during health care visits • 80% Lack of adult primary care and specialty providers • 80% Difficulty breaking bond with adolescents and parents • 79% Lack of office staff skills in transition • 76% Lack of reimbursement for transition activities 2008 AAP Periodic Survey# 71

15. What do the data tell us? Are there health outcomes associated with the health care transition process?

16. Few outcome studies available… • But…. • Sickle Cell Disease in past decade • Dramatic increases in survival up to age 18 yrs • Increased mortality for those over age 18 yrs • Many deaths within 1 – 2 yr of transition to adult care • Increased rehospitalization rates from 18 to 35 yrs • HIV • Psychosocial challenges with transition to adult care • Declining adherence to therapeutic regimen • Decline in CD4 levels

17. Help is on the way…. • New AAP Health Care Transition agenda • Got Transition – new National Health Care Transition Center (www.gottransition.org) • Support for the Family Centered Medical Home approach • National health care reform efforts affecting youth and young adults

18. Health Care Transition clinical report • Pediatrics, July 2011 • Served as basis for the four HCT agenda items (best practice, financing, education, research) • Developed by an expert authoring group • Joint endorsement by AAP, AAFP, and ACP • Reviewed by large and diverse constituency

19. Health Care Transition clinical report • Targets all youth • Algorithmic structure provides logical framework • Branching for youth with special health care needs • Provides framework for future condition or specialty specific applications • Explicit guidance about practice structure and process beginning at the 12 year check-up • Extends through the transfer of care to an adult medical home and adult specialists

21. Algorithm FIRST STEP • Do you have a transition policy for your practice? • If yes, do you share it with staff and patients? • Why have a transition policy? • Ensure consensus • Ensure mutual understanding of the processes involved • Provides structure for evaluation and audit

22. Health Care Transition Milestones(from the algorithm) • Age 12 - Youth and family aware of the practice’s health care transition and transfer policy • Age 14 – Health Care Transition plan initiated • Age 16 – Youth and parental expectations and preferences regarding adult health care • Age 18 – Transition to adult model of care • (if appropriate for cognitive ability) • Age 18 – 22 – Transfer of care to adult medical home and specialists

23. Got Transition? – Getting to “Yes” The National Health Care Transition Center in July 2010 • Assuring health care transition implementation in health care practices as a result of quality improvement learning collaboratives • Providing access to proven health care transition tools for professionals, youth, and families • Helping state and national partners measure their progress and develop health care transition policies and initiatives • Hosting conversations using social media technology as the “go to” resource for health care transition information and networking • Promoting policy changes for better access to health care transition services including improved health care provider reimbursement

25. Six Core Elements of HCT Improvement • Written policy – office or institutional policy • Registry – ability to anticipate and track • Preparation – readiness assessment and education • Planning – health care transition plan • Transfer Adult model of care after age 18 for most youth Proactive transfer of care to adult providers • Closure – defining the end of transition

26. Health Care Transition in a practice • Three key steps • Preparation – assuring that young adults are ready to manage their own health care as independently as possible • Planning – assuring that health care transition needs are anticipated and responsibility is clear about who will do what when (youth, parent, physician/provider) • Implementation – assuring the smooth and seamless transfer of care from pediatric to adult health care

27. Preparation • Some elements start in early childhood • Discussion of vision of the future with parents • Anticipation of possible future needs (guardianship, estate planning, etc) • Some elements begin in middle childhood • Child’s awareness of his/her health condition • Initiation of self care activities • Basic knowledge about emergencies

28. Preparation • Can a youth…? • Name their primary care physician • Name their insurance carrier • Make an appointment for an office visit • Refill a prescription • Name their allergies • Summarize their past medical history • Provide a family history • Respond to a personal health emergency (or that of someone else)

29. Preparation • Can a youth with a chronic condition(s)…? • Do all of the above and… • Name his/her condition(s) • Name his/her specialty care physicians • Name his/her medications; side effects • Understand impact of condition on ability to function independently • Anticipate health-related needs in new settings (going to college, new job, military service, etc.)

30. Planning • Transition plan initiated by age 14 • May be basic at first • Refined at annual visits until transfer of care • More complex for children with special health care needs • May be a section of a written care plan • Transition registry • Provides means of anticipating youth in the transition age group (14 to 22) • Provides means of tracking transition related activities • Provides means of evaluating transition performance

31. Implementation • Transition planning as part of each adolescent visit • Coordination of transition-related activities for children with special health care needs • Office care coordinator is also transition coordinator • Active involvement in identification of adult primary and specialty care providers • Active communication of useful information to new adult provider(s) – the transition package

32. Implementation • Creation of portable medical summary • Creation or use of condition-specific “fact sheets” • Availability as consultant for new adult provider • Direct communication with new adult provider • Phone conversation • Agreement on timing of transfer

33. Practice-based health care transition improvements initiatives • Health care transition discussions at office staff meetings • Identify responsible person/team to improve HCT in the office • Draft and adopt a Health Care Transition policy, share with staff, post in a visible location, and discuss with youth and families • Adopt a Health Care Transition checklist or agenda for office visits from age 14 and older

34. Family and youth transition preparation ideas • Ask practice: Is there a transition policy? What is done to prepare youth and young adults? • Self assessment of readiness- family and youth “checklists” • Got Transition information and dialogue: • Find us on Facebook • Tune into Got Transition Radio Show- next episode January 25. Register through www.gottransition.org Previous episodes on I-tunes • Healthy and Ready to Work on Got Transition website • Find it all through www.gottransition.org

35. Resources • www.gottransition.org • www.hrtw.org • http://jaxhats.ufl.edu • www.mahec.net/quality/chat.aspx?a=10 • cooley@cmf.org • ann.walls@gottransition.org

36. References • AAP, AAFP, ACP: A Consensus Statement on Health Care Transition for Young Adults with Special Health Care Needs. Pediatrics, 2002, 110:6, 1304 • AAP, AAFP, ACP: Clinical Report—Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, July, 2011 • White, PH. Destination known: Planning the transition of youth with special health care needs to adult care. Adolescent Health Update, 2009, 21:3