Kitty O’Hare, MD Instructor in Medicine Harvard Medical School

1. Current Perspectives on Resident Education in Transition and Care of Youth with Special Health Care Needs Kitty O’Hare, MD Instructor in Medicine Harvard Medical School

2. Objectives • Physician barriers to transition • My work as a resident, with residents • Where we need to go from here

3. Definition of Transition “…the purposeful, planned movement of adolescents and young adults… from child-centered to adult-oriented health care system.” A Consensus Statement On Health Care Transitions For Young Adults With Special Health Care Needs. AAP, AAFP, ACP-ASIM

4. Goals of Transition • Provide care that is patient-centered, age and developmentally appropriate • Promote skills in communication, decision-making, assertiveness, self-care, and self-advocacy • Enhance a sense of control and interdependence in health care American Academy of Pediatrics Committee on Children with Disabilities and Committee on Adolescence

5. Five Cornerstones of Transition Flexibility Coordination Continuity Comprehensiveness Responsiveness

6. Case HPI: 32yo female presents for her yearly evaluation with the Spina Bifida program of a children’s hospital. She reports no hospitalizations or illnesses since her last visit one year ago. At the last visit, she was advised to find a gynecologist and/or internist for routine primary care. When asked about this, she shrugs and says, “I keep putting it off.” For urgent medical problems she goes to an emergency room. PMH: -Spina Bifida s/p repair -multiple UTI’s -decubitus ulcers -last Pap smear >5 years ago -last BP check >2 years ago, no lipid levels on record -some menstrual irregularity

7. PMD: none outside of the Spina Bifida program Meds: none SH: -lives partially with parents, partially with boyfriend -has been dating boyfriend >1 year -not asked if sexually active -graduated high school several years ago -works 6 hours/week, stamping postcards; coworkers all have severe intellectual disability

8. February 2nd, 2009 Seeking grown-up care MDs' unease found to leave many disabled adults with pediatricians “The incidence of adult disabled patients staying with their pediatricians long after their 18th birthday is one of many issues raised in a report released today by The Arc of Massachusetts, an advocacy group for people with intellectual and developmental disabilities. The study, ‘Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts,’ found that many disabled adults face longer waits than most people finding good internists, and that prevents them from getting the best care for common adult conditions such as hypertension, heart disease, or thyroid disorders.” “The report recommends that the state call for added training for doctors to become more sensitive to the needs of disabled adults.”

9. The Arc Report • Specifically targeting adults with intellectual and developmental disabilities (ID/DD) • Focus groups, individual interviews and online surveys in 2007 and 2008 • Patients, parents, support staff, health care professionals, legislators and insurance providers • Identified barriers to care in Knowledge, Communication, Quality, Access, Insurance and Care Coordination • Provided 6 recommendations for improving care:

10. 1. Develop and implement a robust educational program for health care professionals 2. Reduce reimbursement barriers of health care professionals and community support staff 3. Improve access to high-quality health care at medical practices and hospitals 4. Develop and provide formal care coordination for adults with ID/DD 5. Develop and implement a robust training program for individuals with disabilities, families, community support professionals, and volunteers 6. Conduct additional research

11. Sometimes, they [health care professionals] can’t deal with people with disabilities and that’s very sad. (Self-Advocate) …they’re [health care professionals] not sensitized to this population, nor do they have education in this, or training in how to deal with this population. (Parent/Guardian) He’s [internist] a real nice guy, but I don’t think he does such a great job. He never puts my son on the table. When I go to the doctor, they say, Get undressed, [and] he never does that, ever [with my son]. He [internist] just kind of does his vitals and asks me question[s], or my husband questions, but he doesn’t give him a really good physical. I don’t think he really knows what to do. (Parent/Guardian) I think there’s some sensitivity, but it kind of comes around to also they [doctors] really don’t know whether they’re supposed to talk to you or talk to her [the patient]. And with protocol, they should talk to her first anyway, but sometimes people just kind of sidestep and go right to the parent. (Parent/Guardian) [My son is] twenty-five. I go to neurology and I sit with babies and I’ll say to theneurologist, where should we go? [And the neurologist responded,] Really, you can stayhere. The problem is he doesn’t know where to send us. Who’s going to see this kid?He sees…his orthopod, his GI, everything…at Children’s Hospital. (Parent/Guardian) www.arcmass.org

12. Sometimes, they [health care professionals] can’t deal with people with disabilities and that’s very sad. (Self-Advocate) …they’re [health care professionals] not sensitized to this population, nor do they have education in this, or training in how to deal with this population. (Parent/Guardian) He’s [internist] a real nice guy, but I don’t think he does such a great job. He never puts my son on the table. When I go to the doctor, they say, Get undressed, [and] he never does that, ever [with my son]. He [internist] just kind of does his vitals and asks me question[s], or my husband questions, but he doesn’t give him a really good physical. I don’t think he really knows what to do. (Parent/Guardian) I think there’s some sensitivity, but it kind of comes around to also they [doctors] really don’t know whether they’re supposed to talk to you or talk to her [the patient]. And with protocol, they should talk to her first anyway, but sometimes people just kind of sidestep and go right to the parent. (Parent/Guardian) [My son is] twenty-five. I go to neurology and I sit with babies and I’ll say to theneurologist, where should we go? [And the neurologist responded,] Really, you can stayhere. The problem is he doesn’t know where to send us. Who’s going to see this kid?He sees…his orthopod, his GI, everything…at Children’s Hospital. (Parent/Guardian) www.arcmass.org

13. Sometimes, they [health care professionals] can’t deal with people with disabilities and that’s very sad. (Self-Advocate) …they’re [health care professionals] not sensitized to this population, nor do they have education in this, or training in how to deal with this population. (Parent/Guardian) He’s [internist] a real nice guy, but I don’t think he does such a great job. He never puts my son on the table. When I go to the doctor, they say, Get undressed, [and] he never does that, ever [with my son]. He [internist] just kind of does his vitals and asks me question[s], or my husband questions, but he doesn’t give him a really good physical. I don’t think he really knows what to do. (Parent/Guardian) I think there’s some sensitivity, but it kind of comes around to also they [doctors] really don’t know whether they’re supposed to talk to you or talk to her [the patient]. And with protocol, they should talk to her first anyway, but sometimes people just kind of sidestep and go right to the parent. (Parent/Guardian) [My son is] twenty-five. I go to neurology and I sit with babies and I’ll say to theneurologist, where should we go? [And the neurologist responded,] Really, you can stayhere. The problem is he doesn’t know where to send us. Who’s going to see this kid?He sees…his orthopod, his GI, everything…at Children’s Hospital. (Parent/Guardian) www.arcmass.org

14. Sometimes, they [health care professionals] can’t deal with people with disabilities and that’s very sad. (Self-Advocate) …they’re [health care professionals] not sensitized to this population, nor do they have education in this, or training in how to deal with this population. (Parent/Guardian) He’s [internist] a real nice guy, but I don’t think he does such a great job. He never puts my son on the table. When I go to the doctor, they say, Get undressed, [and] he never does that, ever [with my son]. He [internist] just kind of does his vitals and asks me question[s], or my husband questions, but he doesn’t give him a really good physical. I don’t think he really knows what to do. (Parent/Guardian) I think there’s some sensitivity, but it kind of comes around to also they [doctors] really don’t know whether they’re supposed to talk to you or talk to her [the patient]. And with protocol, they should talk to her first anyway, but sometimes people just kind of sidestep and go right to the parent. (Parent/Guardian) [My son is] twenty-five. I go to neurology and I sit with babies and I’ll say to theneurologist, where should we go? [And the neurologist responded,] Really, you can stayhere. The problem is he doesn’t know where to send us. Who’s going to see this kid?He sees…his orthopod, his GI, everything…at Children’s Hospital. (Parent/Guardian) www.arcmass.org

15. Sometimes, they [health care professionals] can’t deal with people with disabilities and that’s very sad. (Self-Advocate) …they’re [health care professionals] not sensitized to this population, nor do they have education in this, or training in how to deal with this population. (Parent/Guardian) He’s [internist] a real nice guy, but I don’t think he does such a great job. He never puts my son on the table. When I go to the doctor, they say, Get undressed, [and] he never does that, ever [with my son]. He [internist] just kind of does his vitals and asks me question[s], or my husband questions, but he doesn’t give him a really good physical. I don’t think he really knows what to do. (Parent/Guardian) I think there’s some sensitivity, but it kind of comes around to also they [doctors] really don’t know whether they’re supposed to talk to you or talk to her [the patient]. And with protocol, they should talk to her first anyway, but sometimes people just kind of sidestep and go right to the parent. (Parent/Guardian) [My son is] twenty-five. I go to neurology and I sit with babies and I’ll say to the neurologist, where should we go? [And the neurologist responded,] Really, you can stay here. The problem is he doesn’t know where to send us. Who’s going to see this kid? He sees…his orthopod, his GI, everything…at Children’s Hospital. (Parent/Guardian) www.arcmass.org

16. PEDIATRICS Vol. 123 No. 2 February 2009, pp. 417-423 Transition From Pediatric to Adult Care: Internists' Perspectives Nadja G. Peter, MD, Christine M. Forke, MSN, CRNP, Kenneth R. Ginsburg, MD, MSEd and Donald F. Schwarz, MD, MPH

17. Random survey of U.S. board-certified Internists • Asked to name and rank their concerns about transition • Highest-ranked concerns: • lack of training in congenital and childhood-onsetconditions • lack of family involvement • difficulty meeting patients'psychosocial needs • needing a superspecialist • lack of adolescenttraining • facing disability/end-of-life issues during youthand early in the relationship • financial pressures limitingvisit time • families' high expectations

18. Survey of 1288 U.S. internists and pediatricians • Assessed comfort with primary care for patients with sickle cell disease or cystic fibrosis • 15% of internists were comfortable providing primary care for adults with CF, vs. 38% of pediatricians • 32% of internists were comfortable providing primary care for adults with sickle cell, vs. 35% for pediatricians • <50% of internists felt that they should take primary care responsibility for adult patients with CF or sickle cell

19. AAP Periodic Survey of FellowsOctober 2008 Random survey 1,605 practicing US pediatricians 628 respondents who actually treat adolescents 2/3 of respondents thought that transition planning should occur between ages 18 and 20

20. http://www.incenterstrategies.org/jan07/factsheet6.pdf

21. Current Perspectives on Resident Education in Transition and Care of Youth with Special Health Care NeedsManisha S. Patel, MD and Kitty O’Hare, MD • We wanted to know if residency programs are addressing the needs of adults with childhood-onset illness • We distributed an anonymous online survey to all residents, all levels in the Internal Medicine and Pediatrics residencies at Penn and CHOP • Eliminated responses from all combined-training and non-categorical residents

22. Questions we asked: • Is there an age at which you think patients should be transitioned from pediatric to adult health care providers? What age? • True or False: During residency, I have attended at least one lecture or training session about transitioning patients from pediatric to adult health care. • On the wards, how comfortable are you managing a patient with the following conditions? • Asthma • Sickle cell disease • Cystic fibrosis • Type I diabetes • Epilepsy • Autism • Spina Bifida • Cerebral palsy • Trisomy 21 • Congenital Heart Disease

23. In your continuity clinic, how comfortable are you managing one of the above conditions? In your residency, how many didactic sessions have you attended regarding each of these conditions? In your opinion, have you received sufficient training in these conditions? In your practice after residency, how likely are you to manage a patient with one of these conditions? Variables were graded 1 to 5 (e.g 1 = very unlikely or uncomfortable and 5 = very likely or comfortable)

24. 64 IM residents and 30 Peds residents were included in the analysis. The mean age at which they felt transition should occur was 18.3 years (+/- 1.4). 73% (22/30) of Peds residents had received at least one lecture on transition, while only13.8% (9/64) of IM residents had attended one such lecture. On the wards, Peds residents were more comfortable with all listed illnesses, except for Congenital Heart Disease, which was equal across groups. Most IM residents did not think they would care for patients with Autism, Spina Bifida, Cerebral Palsy, Trisomy 21, and Congenital Heart Disease in their practice after residency. Most IM residents thought their post-residency practice would include Asthma, Sickle cell disease, and Type I diabetes only, out of the listed conditions. ***Interestingly, a recent study of congenital heart disease patients in Canada showed nearly equal prevalence among adults and kids. hmmmm……

25. Conclusions from these studies Older internists are not knowledgeable about many childhood-onset diseases Newer internists are not being trained in childhood-onset diseases, despite improved patient survival to adulthood Neither pediatricians nor internists are being trained to transition young adults with chronic illness

26. Before even conducting the study, our hypothesis was that no one was talking about transitions of young adults with special health care needs So we decided, as residents, to do something about it

27. WISHES:Working Initiative for Special Health Education Services Kitty O’Hare, MD and Manisha S. Patel, MD

28. Goals Create and administer a health care curriculum pertinent to Youth with Special Health Care Needs (YSHCN) Facilitate the transition of YSHCN from pediatric to adult medical providers, and educate health care professionals on the importance of transition Train Med-Peds residents as providers for YSHCN

29. Our Model

30. 2002 AAP, AFP, and ACP-ASIM Consensus Statement on Children with SHCN Identify a health provider to coordinate transition Train primary care providers in transition services Maintain a portable medical summary Create a written health transition plan by age 14 Apply standard primary care guidelines to children with SHCN Ensure affordable, continuous health insurance AAP/AAFP/ACP-ASIM. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs.

31. Systems change • Passed a resolution at the AAP resident section that the AAP create a national transition curriculum for residents • Transition elective • Adult Congenital Heart Disease, Cystic Fibrosis, Oncology Survivorship, Genetics and Metabolism

32. Practitioner Education Quarterly subspecialty conferences Monthly educational conferences Medical school advocacy seminar Leadership Education in Neurodevelopmental Disabilities (LEND) program for health care professionals “Chalk talks” on transition issues

33. Patient Education A resident devised a “Healthy Choices” curriculum for the Widener School for intellectual disabilities Multisensory presentations to address barriers of deafness, blindness, and mutism Most topics had never been addressed with the students Self-esteem Relationships Sexuality Nutrition Exercise Substance abuse  

34. Sickle Cell Program A resident devised a transition binder which included: a medical information card, tips on self advocacy in the health care setting, and a portable health summary for all adolescents with sickle cell disease The summary will be used to prepare patients for transition to adult hematology services

35. Adult Congenital Heart Disease Program • Research-based initiative • Young adults provided with transition information and health binders in support groups, vs. usual care • Organized by a resident

36. REACHRapport, Empowerment, Advocacy through Connections and Health Program for and by young adults with chronic health care needs Open to CHOP and non-CHOP patients ages 16 and over Meets one Saturday/month Topics include Relationships, Stress Management, Health Summaries A resident teaches classes on keeping a health binder

37. Started at Cincinnati Children’s • Transition Clinic • Focused on education and vocation training • High school program • Internship with a corporation • Classroom instruction in workplace and life skills • Adult program • Employment, job retention and career advancement for individuals with disabilities

38. Project SEARCH at CHOP • 5 seniors selected from the Widener School in Philadelphia • Multidisciplinary evaluation- PT, OT, ST, SW, MD, psychology • Job coaches assigned for job trials • Goal: employment at CHOP • Results: 2 students employed full-time after graduation

39. Future Directions • Mandate resident education in transition issues for pediatrics, internal medicine and family medicine using the ACGME core competencies • Patient Care, Medical Knowledge, Practice-Based Learning, Systems-Based Practice, Communication Skills, Professionalism • Explore novel curricula for teaching childhood-onset chronic disease to the primary care physician • Enforce existing mandates for subspecialty training • eg. 2005 ACC/AHA/AAP Task Force 6: Training in Transition of Adolescent Care and Care of the Adult With Congenital Heart Disease J Am CollCardiol, 2005; 46:1399-1401

40. Acknowledgements • Manisha S. Patel, MD • Symme Trachtenberg, MSW and Jodi Cohen, MD • Dava Szalda, MD and Benjamin D’Souza, MD • Niraj Sharma, MD • Anne E. Dyson Foundation • American Academy of Pediatrics • Kynett Foundation • Philadelphia Adult Congenital Heart Disease Program • CHOP Hematology Division • Penn-CHOP Med-Peds Program

41. References • AAP/AAFP/ACP-ASIM. A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs. Pediatrics 2002; 110:1304-6. • American Academy of Pediatrics Committee on Children with Disabilities and Committee on Adolescence. Transition of care provided for adolescents with special health care needs. Pediatrics 1996, 98 1203- 1206. • SAM. Transition to Adult Health Care for Adolescents and Young Adults With Chronic Conditions. J Adol Health 2003;33:309-11. • McPherson M, Arango P, Fox HB. A new definition of children with special health care needs. Pediatrics 1998; 102:137-140. • Peter C. van Dyck MD, MPH, Michael Kogan, PhD, Merle McPherson MD, Gloria R. Weissman, MA, Paul W. Newacheck, DrPH. Prevalence and Characteristics of Children with Special Health Care Needs.Archives of Pediatrics & Adolescent Medicine,2004, 158. • AAP’s Medical Home website. http://www.medicalhomeinfo.org • The Arc of Massachusetts. http://www.arcmass.org • Healthy and Ready to Work. http://www.hrtw.org • Wen, P. Seeking grown-up care; MDs' unease found to leave many disabled adults with pediatricians. Boston Globe, February 2, 2009. • Peter NG, Forke CM, Ginsburg KR, Schwarz DF. Transition From Pediatric to Adult Care: Internists' Perspectives. Pediatrics 2009; 123:417-423. • Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, Kerr EA. Comfort of General Internists and General Pediatricians in Providing Care for Young Adults with Chronic Illnesses of Childhood. J Gen Int Med 2008; 23:1621-7. • McManus M, Fox H, O’Connor K, Chapman T, MacKinnon J. Pediatric Perspectives and Practices on Transitioning Adolescents with Special Needs to Adult Health Care. National Alliance to Advance Adolescent Health fact sheet 2008. http://www.incenterstrategies.org/jan07/factsheet6.pdf • Marelli AJ, Mackie AS, Ionescu-Ittu R, Rahme E, Pilote L. Congenital Heart Disease in the General Population. Changing Prevalence and Age Distribution. Circulation 2007, 163-172. • Project Search at Cincinnati Children’s Hospital. http://www.cincinnatichildrens.org/svc/alpha/p/search/default.htm • White, Patience. Transition: a future promise for children and adolescents with special health care needs and disabilities. Rheumatic Disease Clinics of North America. Vol 26. No 3 August 2002 • Children’s Medical Services, Florida. http://www.cms-kids.com/ • CHOP Transition Manual. https://www.chop.edu/lend/pdf/transition_manual.pdf • Adolescent Health Transition Project. http://depts.washington.edu/healthtr/