483 - From Dependence to Independence: Barriers in Pediatric-to-Adult Congenital Cardiology Transitions

Publication Number: 1463.483

Rebecca Delaney, University of Utah, Salt Lake City, UT, United States; John Sheehan, University of Utah School of Medicine, Bountiful, UT, United States; Ritika Nayan, University of Utah School of Medicine, Lehi, UT, United States; Nelangi Pinto, Seattle Children's, Seattle, WA, United States; Roger Altizer, University of Utah School of Medicine, Salt Lake City, UT, United States; Hanna Hedges, University of Utah Clinical Translational Science Institute, Salt Lake City, UT, United States; Heather L. Williamson, University of Utah School of Medicine, Midvale, UT, United States; Ian Lindsay, University of Utah School of Medicine, Salt Lake City, UT, United States; Teresa Hagan Thomas, University of Pittsburgh School of Nursing, Pittsburgh, PA, United States; Andrew K. Moran, University of Utah School of Medicine, Salt Lake City, UT, United States; Angela Fagerlin, University of Utah, SALT LAKE CITY, UT, United States

Background: Adolescents and young adults (AYAs) with congenital heart disease (CHD) face a shift from family-oriented pediatric care to independent adult care. This transition is a key developmental and health system milestone, yet care gaps persist. Understanding lived experiences is essential to designing digital health interventions that build transition readiness, strengthen self-management, and promote lifelong engagement in cardiac care.

Objective: Identify the challenges AYAs and caregivers experience in CHD care and transitions to adult care to inform digital health interventions.

Design/Methods: We recruited AYAs (ages 15–21) and caregivers for eight virtual focus groups and structured discussions using the Design Box participatory design method (Altizer et al., 2017). Questions were organized to promote ideation across different domains to generate game design ideas. This study focused on one domain: the problems that participants faced in pediatric-to-adult CHD care transitions. Transcripts were coded and analyzed thematically to identify challenges, adaptive strategies, and support needs.

Results: There were five AYA groups (n=22; mean age= 18 yrs, SD = 2.2) with 55% male and 82% Non-Hispanic White, and three caregiver groups (n=15; mean age = 45), most of whom were female (78%) and Non-Hispanic White (78%). Five themes captured the transition experience across emotional, behavioral, and systemic domains. Transition anxiety and uncertainty: AYAs and caregivers described significant anxiety related to medical procedures appointments, unfamiliar providers, loss of trusted relationships, and limited preparation. Developing self-advocacy and communication: AYAs struggled to articulate medical needs and relied on caregivers to interpret terminology and communicate with providers. Medical management and knowledge gaps: AYAs and caregivers reported difficulty maintaining medication routines, tracking appointments, and recognizing symptoms. Care coordination and continuity: Caregivers reported feeling dismissed by adult providers and poor record transfers. Educational needs: AYAs wanted clearer guidance on lifestyle decisions, emergency symptoms, and expectations for adult car

Conclusion(s): Transition readiness is not just an individual skill, but an emergent process shaped by emotional, relational, and structural factors. Interventions that reduce anxiety and build knowledge and confidence are vital to help AYAs engage in and navigate adult CHD care. Embedding these strategies into digital, clinical, and educational tools may strengthen engagement and improve long-term outcomes.