1. NEGC TRANSITION WORKGROUP April 10, 2014 Portsmouth, New Hampshire

2. GOALS FOR THIS MEETING 1.Hear from the group about where the field is going 2.Develop “deliverables” related to Transition to Adult Healthcare 3.Outline directions for the coming year

3. This is important because: Systems are beginning to be put in place for transition. But, there continue to be huge challenges from both a systems and individual perspective. We have an opportunity to move the field forward.

4. AGENDA 9:00-9:30 Welcome & Introductions 9:30-10:15 Group Work 10:15-10:30 BREAK 10:30-11:10 Report on or continue Group Work 11:10-11:40 Update on ACMG meeting 11:40-11:50 New Business 11:50-12:00 Action Items and evaluation

5. Introductions Name, job, affiliations? Why interested in Transition to an adult model of Healthcare? From your perspective, where is the field going or in what direction would you like to see it move?

6. Here’s what I found A call to action: Antonelli et al. Pubmed Articles: Transition to Adult Care 2003=117; 2013=346 Addressing “System” change—ACA, transition navigators, medical homes Addressing the individual is just beginning—transition within a developmental context

7. Two interesting references Rutishauser C, Sawyer SM, Ambresin AE. Transition of young people with chronic conditions: a cross-sectional study of patient perceptions before and after transfer from pediatric to adult health care. Eur J Pediatr. 2014 Mar 9. Sharma N, O'Hare K, Antonelli RC, Sawicki GS. Transition Care: FutureDirections in Education, Health Policy, and Outcomes Research. Acad Pediatr. 2014 March - April;14(2):120-127.

8. Our own work: Identity and Transition Who are emerging adults today? Ryan Trecartin (New Yorker Magazine, March 24, 2014) What is the context (medical, social)? Health Readiness Does Identity Achievement relate to successful transitioning? Erikson Psychosocial Stage Inventory

9. Definitions of Success in Transition Different definitions for different subpopulations Need for individualized definitions

10. A question: Are adults with metabolic and other genetic disorders aging prematurely? Are they experiencing adult symptoms at a younger age? If so, might this provide a rationale for an adult medical home?

11. WORK GROUPS Transition Materials with a focus on Mitochondrial Disorders Health Survey for Young Adults Transition Content for GEMSS

12. NCC Transition-ACMG Meeting Defining successful outcome Measuring something important, not just something measurable! Elements Support System Providers A Plan Knowledge Reducing anxiety

13. NCC Transition Projects 1. “Anti” literature review (identifying gaps in evidence based research) 2. “Mixed method” research project Quantitative—health survey, self- reported outcomes (www.neuroqol.org)www.neuroqol.org Qualitative interviews: young people and providers – answers to 3 questions on video

14. NCC Meeting-other insights Pediatricians focus on survival until adulthood; internists focus on long- term health. Forming relationship with adult provider is like entering a marriage— need time and trust. It’s hard to “give away my story” without knowing how it will be used or valued.

15. New Business Speaker’s Bureau—Bill Kubicek Care Coordination—Monica McClain

16. Action Items Deliverables—timelines Transition for Mitochondrial Disorders Health Survey Transition for GEMSS Future Directions for our Group

17. Evaluation What did you like or not like about this meeting? What will you “take away”? THANK YOU!!