Abstracts

Rationale: Transitioning to adult care is a complex process that provokes anxiety for patients and caregivers alike. Previous efforts by the CHOP Epilepsy team to develop a transition webinar to broadly address transition concerns was time and resource intensive and was ultimately underutilized by parents and caregivers. Feedback solicited from youth in an existing patient council was that information from this webinar could have been distilled to a one-page handout. Thus, our aim was to create a Youth Advisory Council (YAC) for patients with epilepsy to drive the development of useful, high-quality, patient-centric transition related materials._x000D_
Methods: In 2020, a multidisciplinary group including clinicians from the CHOP Epilepsy Program, the Adult Care and Transition Team, and Penn Epilepsy convened to develop a YAC charter and recruit previous and existing CHOP epilepsy patients to participate in recurring transition related meetings. Patients that participated in these YAC meetings consented and were compensated $25 per session via reloadable debit cards. Since the project was launched during the COVID pandemic, sessions were virtual and were facilitated by CHOP staff. Epilepsy medical staff were excluded from participation to promote open dialogue from participants about their experiences transitioning to adult care. All sessions had a set agenda and as per the charter, every participant was asked for input. After each session, a REDCap survey was distributed to anonymously collect demographic information and to provide qualitative feedback. The explicit goal for Year 1 of YAC was to develop the content and design of an epilepsy focused transition of care website._x000D_
Results: The first YAC meeting was in March 2021 and they have been held monthly since then (except for August 2021), total = 14. Attendance at these sessions ranged from 1-7 participants (mean = 3.4). From the 28 survey responses: ages ranged from 14-25 (mean = 19.8) and 75 % were female (n=21). Self-identified races were: 68% White, 21% Black, 21% Asian, and 11% Latin. Qualitative feedback was positive and generally fell into three categories: connection (appreciated sharing their stories and hearing others); structure (appreciated that each session had an explicit agenda and goals); and inclusion (appreciated being called on and having their input integrated into the transition materials). As a result of the YAC’s efforts, the transition of care website was launched in February 2022. The YAC is now working on the gamification of transition education._x000D_
Conclusions: The YAC meetings ultimately provided a successful forum for the development of a high quality, patient-focused website. Although these meetings required considerable forethought before being launched, the formulaic approach has proven to be an effective strategy for producing results and has been embraced by participants. This engagement strategy can likely be replicated for other patient-facing projects across the organization._x000D_
Funding: Grant funding was provided by the United States Health Resources and Services Administration.