1. TRANSITION WORK GROUP Erica Lawson, Aimee Hersh, Peter Chira 1

2. AGENDA 2 Welcome and introductionsErica Lawson Sick Kids Transition ProgramLynn Spiegel Columbia Transition ProgramLisa Imundo Arthritis Foundation Transition Programs Jen Horonjeff & Jenn Ziegler Adapting the Six Core Elements of Health Care Transition for Rheumatology Erica Lawson Discussion: Transition Research Agenda

3. The Six Core Elements of Health Care Transition 1.Transition Policy 2.Transitioning Youth Registry 3.Transition Preparation (use of transition readiness assessment) 4.Transition Planning (use of portable medical summary and transition action plan) 3 5. Transition and Transfer of Care (transition to adult model of care, transfer checklist, communication or shared care with adult provider) 6. Transfer completion (documentation of transfer) http://www.gottransition.org

4. What’s going on in Transition? ACR/ACP Transition Work Group & Tool Development CARRA Long-term Follow-up Registry Arthritis Foundation Transition Program (Jenn Ziegler, Director) Teens Taking Charge to be publically released in 2016 iPeer2Peer Mentoring Program RCT 4

5. CARRA Transition Work Group 5 Patient-centered Transition Program Development Practice-centered Transition Quality Improvement

6. Discussion Focus on JIA & SLE (ACR/ACP tools, CARRA Registry) Leverage CARRA Registry to assess post-transition outcomes Potential Practice-based Projects: High/Medium/Low intensity Transition Support CTPs: feasibility study to assess ACR/ACP work products Develop and evaluate educational interventions for adult rheumatologists on the care of young adults with childhood-onset rheumatic disease 6

7. Discussion Potential Patient-centered Project: Patient/Parent/Young Adult Needs Assessment: Web-based transition focus groups leveraging JIA OMERACT approach Partner with Arthritis Foundation to: Evaluate new patient-centered programs/tools Disseminate proven programs (e.g. Teens Taking Charge, iPeer2Peer) 7

8. Discussion Partner with PR-COIN to: Assess JIA self-management Assess implementation of transition tools in JIA Partner with ACR/industry to improve transfer to adult care Registry of adult rheumatologists who want former pediatric patients Disseminate an educational intervention for adult rheumatologists (CME credit) 8

9. Next Steps Identify key outcomes to measure transition success: transfer to adult care, self-management, quality of life, disease control, etc.? Identify adult rheumatology collaborators to inform research agenda Potential collaboration with Spark Healthcare (CF RISE) to further develop Transition improvement tools for our clinics Determine which project(s) to move forward on 9

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11. Our Vision 11 Practice-centered Transition Quality Improvement + Patient-centered Transition Program Development Transition Work Group