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

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 Why Transition?

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

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

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.

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.

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

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

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

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