Participant feedback on a health care transition conference for youth with medical complexity

Each year in the United States, an estimated 1.2 million youth with chronic conditions or functional limitations reach adulthood and must transition from pediatric to adult health care, a process often fragmented by service loss, limited adult providers, and complex waiver and financial systems. The University of Alabama at Birmingham developed the Staging Transition for Every Patient (STEP) Program which includes an annual Healthcare Transition Conference. Here we describe the conference and analyze two years of attendee feedback.

Conference planning followed an iterative, participatory co-design framework in which a steering committee of providers, community partners, caregivers, and individuals with lived experience shaped programming, and attendee feedback from each year informed the next. We evaluated the conference using post-conference surveys from the 2024 (n = 34) and 2025 (n = 43) events, summarized with descriptive statistics and thematic analysis; feedback from 2024 was used to tailor the 2025 program.

Across both years, attendees valued content on medical transition, Medicaid and community waivers, financial and legal planning, and lived experience. In 2025, 88% reported being "very likely" to attend again. In response to 2024 feedback, the 2025 program added sessions on financial planning, guardianship, day-program sessions and an expanded self-advocate panel. Despite these changes, the 2025 cohort continued to prioritize psychosocial topics including caregiver support and respite (55.8%), social support and relationships (53.5%), and aging with a disability (51.2%).

A community-engaged, iterative conference was highly valued but revealed a persistent gap between delivered logistical content and unmet psychosocial support needs. The STEP conference offers a transferable model for community-based transition education and a method for identifying and responding to evolving family needs.