The CHOP – HUP Transition Program The Philadelphia Experience

1. The CHOP – HUP Transition Program The Philadelphia Experience Vanessa Nixon, The Children’s Hospital of Philadelphia Linda Slaven, The Hospital of the University of Pennsylvania

2. Why Transition? • Patients with thalassemia are living much longer • Age-appropriate care can be challenging in a pediatric facility • A partnership between CHOP and The Hospital of the University of Pennsylvania (HUP) developed, creating the first adult only Thalassemia Treatment Center (TTC) in the nation

3. Building an Infrastructure • For the past 2 years, CHOP and HUP have worked together to ensure seamless care coordination. • Assessed social work, nursing, blood bank, infusion unit needs • Established liver R2 and cardiac T2* protocols • Met with Endocrinology, Cardiology, Gastroenterology, other specialists • Established EPIC Care Everywhere to allow viewing of CHOP electronic medical record at HUP • Regular weekly meetings with CHOP thalassemia program to review patient care plans • HUP thalassemia nurse shadowed CHOP thalassemia nurse

4. Change Can Be Difficult • Many adult patients received care at The Children’s Hospital of Philadelphia (CHOP) since early childhood • The idea of leaving the center they know and trust produced anxiety • Transition Focus Group were initiated

5. Transition Focus Groups • Designed for adult patients and family members to incorporate their important feedback in the transition process. • Forum for sharing concerns, ideas and ensuring adult patients will have a voice and role in the continuity of care as they age.

6. First Focus Group • A total of 18 attendees • Patients raised several issues and concerns • Practical concerns • Parking • Insurance • Medical concerns • blood transfusions • staff training • size of IV catheters • Patients were assured a follow up meeting would be held to address their concerns.

7. Second Focus Group • Total of 24 attendees • Blood Bank doctors from HUP addressed earlier patient concerns • Adsol reduced blood • Washed cells • Antibodies • IV needle size • Each patient’s special needs will be addressed on an individual basis with the Blood Bank staff prior to transition • Follow up to many questions from the prior focus group were answered

8. Overview of the Program • Transition checklists beginning at age 12 years • Includes disease-specific content, insurance, advanced directives, etc • Target education based on responses • Careful selection of patients ready to transition • Team preparation for transition • Communication amongst team • Develop Individualized Care Plans and review with team

9. Overview of the Program • HUP thalassemia nurse present for two visits at CHOP • CHOP thalassemia nurse accompanies patient for first HUP visit • Tour of HUP facilities • Meet with Blood Bank Staff • First transfusion at HUP

10. Final Thoughts • Although two separate facilities, we consider ourselves one united thalassemia program overlapping in patient care and research • Shared Family Advisory Council group and Patient/Family Meetings • Mentorship between older and younger patients/families • In the future, we plan to formally assess the success of the transition program utilizing established surveys to measure: • Decrease in anxiety levels • Clinical outcomes • Adherence • Improvement in iron levels • Our first patient was formally transitioned to HUP in February • Plan to transition 1-2 patients per month starting late summer