1. Provider Perspectives and Patient Abilities Laurie Fishman, M.D. PAS Symposium April 27, 2012 Children’s Hospital Boston

2. What are the clinician’s beliefs and perceptions regarding transition and transfer at Children’s Hospital, Boston? Susan M. Fernandes, M.H.P., P.A.-C.; Laurie Fishman, M.D.; Joanne O’Sullivan-Oliveira, Ph.D., F.N.P.,B.C.; Sonja Ziniel, Ph.D; Patrice Melvin, M.P.H; Paul Khairy, M.D., Ph.D.; Rebecca O’Brien, M.D.; Romi Webster, M.P.H., M.D.; Michael J. Landzberg, M.D.; Gregory Sawicki, M.P.H., M.D. From the Departments of Cardiology, Medicine and Surgery, Children’s Hospital Boston, the Department of Pediatrics, Harvard Medical School, Boston, MA.

3. CHB Provider Survey Cross sectional web based multiple-choice survey Outpatient clinicians at CHB (care for pts >11 years of age) across all specialties – Staff physicians – Nurses – Physician assistants – Social workers IRB approved study Response rate overall 76% (72-100%)

4. Provider Demographics

5. Providers differ in triggers for transfer to adult care CombinedMDPARNSWP value Age7973748290NS Adult Co-morbidities7780748071NS College graduation775574 78.002 Pregnancy5853706449NS Marriage5653606536.013 Alcohol/illicit drugs2921353920.036 High School Graduation 1654820.001 Percentage of each provider group responding to whether the characteristic should require transfer to adult centered provider

6. BARRIERS CombinedMDPARNSWP value Parents attachment to hospital/ provider 96/9598/9591/10096/9592/92ns Pt attachment to provider 959495 97ns Pt cognitive delay86 8584ns Provider attachment to pt/family 7978577892.018 Family non- compliance with transfer 7872718384ns Unstable medical condition 68 776187.015 Lack of qualified adult providers 6675296367.006 Insurance issues37322342 ns Percentage of providers reporting witnessing or experiencing these barriers to transfer of care to adult care providers

7. Age Appropriate Care 43% of clinicians felt they could provide age appropriate care to pts >25 years of age 23% of clinicians felt they could provide age appropriate care to pts >50 years of age Additional analyses of those clinician without adult internal medicine training – 20% felt they could provide age appropriate care to pts >30 years of age – 12% thought they could provide age appropriate care to pts >40 years of age

8. Of the 58% who assess skills 95% assess informally

9. Do We Know Adult Provider Expectations? Pediatric providers had differing ideas regarding knowledge, independence Patients move to other parts of the country – perhaps other providers differ from our local colleagues Hait JPGN 2009

10. Format 1134 adult GI providers identified by AGA membership directory Solicited by email - electronic survey Questions regarding young adult patients transferring INTO practice Asked if issue was important (1 to 5) and if often problematic (yes/no)

11. Demographics of adult GI responders N=363 (34%)

12. Most problems reported in: % of subjects that reported a problem IssueMean importance (± SD) 68% Patients should know the name, dose and major side effects of each medication they are taking. 4.6 (±.65) 55% Patients should be able to relate highlights of their medical history, such as onset, surgeries and procedures. 4.5 (±.62) 53% It is important that the pediatric gastroenterologist provide a medical summary prior to first visit with an adult provider. 4.6 (±.80) 52% Patients should have knowledge of the impact of smoking, drugs and alcohol on their health. 4.6 (±.64)

13. Least problems reported in: % of subjects that reported a problem IssueMean importance (± SD) 21% Patients should be able to research their illness outside the office visit. 3.6 (±.98) 19% Patients should be able to identify persons involved in their health care (both family and professionals) 4.4 (±.66) 16% Patients should be able to attend the visit by themselves. 3.1 (± 1.1) 13% Patients should be able to undergo procedures under conscious sedation. 3.8 (± 1.1)

14. Specific issues in adolescents Yes Do you feel it is important for an adult gastroenterologist to have knowledge of medical aspects (i.e. growth) in IBD in adolescents? 93% Do you feel you have that knowledge? Do you feel it is important for an adult gastroenterologist to have knowledge of developmental issues in adolescents? 86% Do you feel you have that knowledge? 70% 42%

15. Patient Surveys Ambulatory setting, age >9 294 surveys (82%) returned Medication name, dose, side effect (fill in before seeing provider) Fishman JPGN 2011

16. Patients tended to know name and dose of medication (78% overall)

17. When do patients take over care from their parents? Health Maintenance behaviors regarding medication, during clinic visit, between visit 1 my parents only 2 mostly my parents 3 we share equally 4 mostly me 5 I totally do it myself van Groningen IBD 2012

18. Percentage of patients of each reporting “mostly me” or “I totally do it myself” when asked who usually does these tasks

19. Percentage of patients of each age reporting “mostly me” or” I totally do it myself” when asked who usually contact the doctor if there is a problem between visits, who schedules appointments, who remembers appointments, and who gets you to the appointments.

20. Percentage of patients of each reporting “mostly me” or “I totally do it myself” when asked who usually does these tasks

21. Concluding thoughts Helpful to have evidence that includes: Input from all stakeholders – Adult providers – Parents – Post transition patients – Pediatric providers Baseline information Specific information

22. References Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR, Fishman LN. Transition of adolescents with IBD from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr. 2009; 48:61-65. Fernandes S, Fishman LN, O’Sullivan-Oliveira J, Ziniel S, Melvin P, Khairy P, O’Brien R, Webster R, Landzberg M, Sawicki G. Current practices for the transition and transfer of patients with a wide spectrum of pediatric-onset chronic diseases: Results of a clinician survey at a free-standing pediatric hospital. Int J Child Adol Health 2010 3(4): 507-517. Fishman, LN, Houtman D, van Groningren JT, Arnold J Ziniel S. Medication Knowledge: an Initial Step in Self-management for Adolescents and Young Adults with Inflammatory Bowel Disease. JPGN 2011 53(6):641-5.

23. Ref cont. Fernandes SM, Lanzberg MJ, Fishman LN, Khairy P, Sawicki GS, Ziniel S, Melvin P, OSullivan-Oliveira J, Greenspan P, Bhatt AB. Clinician perceptions of transition of patients with pediatric-onset chronic disease to adult medical care: Comparing a pediatric facility integrated within an adult institution with a free-standing pediatric hospital. Int J Child Adolesc Health 2012;5(3): in press. van Groningen J, Ziniel S, Arnold J, Fishman LN. When independent health care behaviors develop in adolescents with inflammatory bowel disease. Inflamm Bowel Dis 2012: in press O’Sullivan-Oliveira J, Fernandes SM, Borges LF, Fishman LN. Transition of Pediatric Patients to Adult Care: An Analysis of Provider Opinion Across Discipline and Role. Ped Nurs 2012: in press