Health Care Transition

1. Health Care Transition Transitions in Care for Adolescents with Special Health Care Needs Preparing for the Difference between pediatric and adult health care Patience H. White, MD, MA, FAAP

2. Disclosure • Dr. White does not have a financial relationship or interest with any proprietary entity producing health care goods or services related to the content of this CME activity. • The content will not include discussion/reference of any commercial products or services. • Dr. White does not intend to discuss an unapproved/ investigative use of commercial products/devices.

3. www.hrtw.org

4. What age would people say would be the best years of their lives beginning at age 10 in 5 year blocks?

5. Don’t Want to Grow Up: age adults say they want to remain(USA Today Poll 2000)

6. Health Is A Resource For Life Success in the classroom, within the community, and on the job requires that young people are healthy. To stay healthy, young people need an understanding of their health and to participate in their health care decisions.

7. List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources. Objectives

8. What do you think youth with SHCN say about successful transitions to adulthood? At what age should children/youth start asking their own questions to their Doctor? At what age does your practice encourage assent signatures? Think about

9. What does the Data tell us? Not everything that can be counted counts, and not everything that counts can be counted. Albert Einstein

10. Outcome Realities Nearly 40% of youth with SHCN cannot identify a primary care physician 20% consider their specialist to be their ‘regular’ physician Primary health concerns are not being met Fewer work opportunities, lower high school grad rates and increased drop out from college YSHCN are 3 X more likely to live on income < $15,000 CHOICES Survey, 1997; NOD/Harris Poll, 2000; KY TEACH, 2002

11. Youth With Disabilities Stated Needs for Success in Adulthood PRIORITIES: • Career development(develop skills for a job and how to find out about jobs they would enjoy) • Independent living skills • Finding quality medical care(paying for it; USA) • Legal rights • Protect themselves from crime(USA) • Obtain financing for school(USA) SOURCE: Point of Departure, a PACER Center publication Fall, 1996

12. Youth are Talking: Are we listening? Survey - 1300 YOUTH with SHCN / disabilities Main concerns for health: • What to do in an emergency, • Learning to stay healthy* • How to get health insurance*, • What could happen if condition gets worse. SOURCE: Joint survey - Minnesota Title V CSHCN Program and the PACER Center, 1995 *SOURCE: National Youth Leadership Network Survey-2001 300 youth leaders disabilities

13. What would you think a group of “successful” adults with disabilities would say is the most important factor that assisted them in being successful?

14. FACTORS ASSOCIATED WITH RESILIENCE for youth with disabilities: Which is MOST important? • Self-perception as not “handicapped” • Involvement with household chores • Having a network of friends • Having non-disabled and disabled friends • Family and peer support • Parental support w/out over protectiveness Source: Weiner, 1992

15. Are 17 year olds Involved in their Disease Self Management? 2005 British Study of 77 17 year old youth with JIA: • 20% NOT taking their own meds Significant association with independent visits (p=0.002) • 55.8% see Rheum with parents, 26% see GP independently • 79% household chores; only 1 work exp (none for 12-14 yr olds) • 14% had had no Career counselling (CC) Median no. of CC sessions 1 (0 to 6) • Adolescent Rheumatology Transition Knowledge Questionnaire ART – KQ Sub-optimal-Median score = 9 (1 to 15) • HRQol (JAQQ) -Median 2.9 (1 to 6.8) Biggest problems: Depression 63.6% Fatigue 49.4% Frustration 39% Shaw KL, Southwood TR, McDonagh JE 2005

16. AERC Outcome Research • 200 youth (ages 12-20)with SHCN & parents completed the following instruments: CMI, work experience, demographics, parents perception of work readiness • Results: - Majority of youth with SHCN feel future certain (attitude similar to age mates without disabilities), delayed in all other CMI categories, esp. knowledge of workplace - Parents think first job experience should be at age 16 or older - parental SES not correlated with CMI

17. Internal Medicine Nephrologists (n=35) Maria Ferris, MD, PhD, MPH, UNC Kidney Center

18. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs • American Academy of Pediatrics • American Academy of Family Physicians • American College of Physicians - American Society of Internal Medicine Pediatrics 2002:110 (suppl) 1304-1306

19. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify primary care provider 2. Identify core knowledge and skills • Knowledge of condition, prioritize health issues • Maintain an up-to-date medical summary that is portable and accessible • Apply preventive screening guidelines 6. Ensure affordable, continuous health insurance coverage Pediatrics 2002:110 (suppl) 1304-1306

20. IOM QUALITY MEASURESHealth Care Processes Should Have: • Care based on continuing healing relationships • Customization based on patient needs and values • Patient as source of control • Shared knowledge and free flow of information • Safety • Transparency • Anticipation of needs SOURCE: Crossing the Quality Chasm 2001

21. Objectives List the key elements of the national academies’ (AAP, AAFP, ACP, IOM) young people’s and HCPs’ perspective on transition to adult healthcare Define the role of physicians and other care providers/coordinators in the transition of youth from pediatric to adult medical care. Discuss use of transition tools from the Healthy and Ready To Work (HRTW) website and other national resources.

22. What is transition for youth with SHCN? When did you transition to adult care? How about your children? What skills do youth need before transitioning to adult HC providers? How do you support families in their transitioning roles? Think About

23. What is Transition? Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals. Components of successful transition • Self-Determination • Person Centered Planning • Prep for Adult health care • Work /Independence • Inclusion in community life • Start Early

25. “The physician’s prime responsibility is the medical management of the young person’s disease, but the outcome of this medical intervention is irrelevant unless the young person acquires the required skills to manage the disease and his/her life.” Ansell BM & Chamberlain MA. Clinical Rheum. 1998; 12:363-374 Health & Wellness: Being Informed

26. Time Jan 2004

27. Societal Context for Youth without Medical Conditions in Transition • Parents are more involved - dependency “Helicopter Parents” …Blackhawk types…(CBS 2007) • Twixters = 18-29 - live with their parents / not independent - cultural shift in Western households - when members of the nuclear family become adults, are expected to become independent • How they describe themselves (ages 18-29) 61% an adult 29% entering adulthood 10% not there yet (Time Poll, 2004)

28. Prepare for the Realities of Health Care Services Difference in System Practices • Pediatric Services: Family Driven • Adult Services: Consumer Driven The youth and family finds themselves between two medical worlds …….that often do not communicate….

30. Are you/primary care providers using the ACP/AAP/AAFP/Consensus Statement as a guide to accomplish transition for youth with SHCN? Have Transition programs been shown to work? What age does the literature show is the most effective time to start discussing with the youth about the transition process? How do you teach children and youth with SHCN about their wellness and disease baseline? Think About

31. HRTW Surveys: Results About Those Who Responded 52 physicians / 26 states Most involved with Medical Home projects 47 pediatricians, 4 Med-Peds, 1 Family Consensus Statement- Knowledge 50% were familiar 6 % unsure 42% not

32. 87% Fragmentation of care among systems 56% Lack of services for YSHCN who require supported living 43% Unwilling to transition youth SHCN 82% Lack of knowledge or linkages to community resources 85% Lack of staff time Results: Barriers to TransitionExtremely Important/Important

33. 83%Lack of capacity of adult providers for care of YSHCN 73%Inability to access adult specialty care 75%Limited coverage for services by public/private insurance 61% Low reimbursement levels for transition services Results: Barriers to TransitionExtremely Important/Important

34. Results: Identify Primary Care 46%Have Policy to Transition Youth if yes, what age? 18-22 1% posted the policy for families/youth to see 63%Have practice to whom they refer if yes, why that practice? 70% personal relationship 56%recruitproviders adult primary /specialty (31% want help) 64%support adult providers assuming care for YSCHN (29 % want help)

35. Results: Identify Primary Care 92%provide care coordination to youth with complex conditions (7% want help) 50% have dedicated staff member who coordinates transition care coordinator (overlap)>social worker>nurse

36. Results: Core Knowledge & Skills 36%have forms to support transition (82% want help) 39%provide educational materials regarding transition (48% want help)

37. Results: Core Knowledge & Skills 58%help youth/families plan for emergencies (31 % want help) 68%assist with accommodations school/studying or work (21% want help)

38. Results: Core Knowledge & Skills 63%promote independence in health condition management (25% want help) When youth tern 18-writen policy to discuss? 77% no Do you seek verbal assent? 81% Written 23% 50%refer to skill-building experiences (35% want help)

39. Results: Core Knowledge & Skills 79%refer to community resources/ public benefits(15 % want help) Formal referral mechanisms in place: 39% mental health/counseling 25% adult subspecialty 21% adult PCPs 21% dental < 15% make formal referral to adult services VR, SSI work incentives, school or college services, recreation, transportation, attendant care, Centers for Independent Living, supported living, housing (about 20% provide information)

40. Results: Create Portable Medical Summary 35% Make transportable medical record for some patients (43% want help)

41. Results: Written Health Transition Plan 33%Create individualized health transition plan for at least some patients (39% want help) 61% Helped write IEP goals: 29% none 36% 1-5 x in past year 35% 6 or more times in past year

42. Results: Preventive Screening 86%Preventive screening – CYSHCN 32% AAP forms 21% GAPS 18% Bright Futures 18% Guidelines to Clinical Preventive Services 7% State health department forms Others – created or adapted forms

43. Results: Preventive Screening 65%Screen to identify YSHCN who need transition services (29% want help)

44. Results: Ensure Continuous Health Insurance (6) 43%assist with planning for continuous health insurance during transition (32% want help) 75%assist with SSI medical documentation/re-determination (25% want help)

45. Results: Ensure Continuous Health Insurance (6) 88%want information on coding for reimbursement for transition services who turn for info? Self directed 44% Staff based coor 40% Family to Family 33% Title V 23%

46. Results: Overall practice assessment Rate your practice with regards to transition processes in general: not interested 2% not have, interested 29% beginning stages 25% working on policy/processes 19% have policy and processes integrated 13%

47. Conclusions *Respondents are reluctant to transition their youth with SHCN to adult practices *Respondents are well versed in coordinated care but are reluctant to adopt processes to give youth with SHCN the tools/skills to negotiate adult health care practices

48. 6 Critical First Stepsto Ensuring Successful Transitioning To Adult-Oriented Health Care • Identify appropriate primary care provider 2. Identify core knowledge and skills • Encounter checklists • Outcome lists • Teaching tools Concensus Statement Pediatrics 2002:110 (suppl) 1304-1306

49. Core Knowledge & Skills: Office POLICY • Written transition policy and posted • Legal health care decision making is discussed prior to youth turning 18 • Prior to age 18, youth sign assent forms for treatments • Office forms developed to support transition processes • Identified staff person coordinates transition activities • CPT coding used to maximize reimbursement for transition services

50. Core Knowledge & Skills: MEDICAL HOME • Practice creates an individualized health transition plan before age 14 2. Organizes a structured observation visit to adult office before transfer 3. Practice refers youth to specific primary care physicians 4. Practice actively recruits adult primary care /specialty providers for referral 5. Practice provides support and confers with adult providers pre/post transfer 6. Practice provides care coordination for youth with CTD