159 - The Impact of Disability on Transition from Pediatric to Adult Care for Patients with Congenital Heart Disease
Friday, April 25, 2025
5:30pm – 7:45pm HST
Publication Number: 159.6698
Krisjon Olson, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Xiao Zhang, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Ying Cao, UW-Madison, Madison, WI, United States; Hamayail Ansari, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Makayla A. Thomas, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Catherine Allen, University of Wisconsin School of Medicine and Public Health, Madison, WI, United States; Briana Swanson, University of Wisconsin School of Medicine and Public Health, madison, WI, United States
Assistant Professor University of Wisconsin School of Medicine and Public Health Madison, Wisconsin, United States
Background: The highly specialized and developmentally focused approach of pediatric cardiology care can adversely affect patients’ transition to adult congenital heart disease (CHD) providers, while obscuring the effects of disability from clinicians’ view; up to 62% of patients drop out of care during this period. We describe what we learned from youth with CHD and their families about the impact of disability on their care. Objective: As part of an ongoing study of transition planning to understand barriers and facilitators to healthcare access, we conducted dyadic, semi-structured, interviews of young people between the ages of 12-26 with CHD and a support person of their choice. Design/Methods: Queried clinical registry of 604 patients referred to a CHD transition clinic at a Midwestern academic medical center between 10/21/2021-7/31/2023. Patients were stratified for disability, age, sex, gender, diagnosis, race, geography, and types of surgical intervention based on text analysis of the medical record and prospectively recruited. A purposeful sample of 34 patients and 31 support persons were interviewed. Interviews were recorded, transcribed, and inductive analysis was used to identify dominant themes. Results: 79% of patients identified themselves as living with a disability, a third more than was documented in the medical record. Adolescent and young adult patients were impacted by: 1) providers and families: when providers or families view disability as treatment failure it shapes patient identity and prevents them from engaging the support they need to maintain their health; 2) health care system: patients are affected by how care is organized and a narrowing social support system as they age; and 3) the disability-health paradox: patients with disabilities documented in their medical record were better connected to social services and supports, but less confident and knowledgeable in their transition to adult care than those without documented disabilities.
Conclusion(s): Interactions in clinic and with the wider health system, coupled with patients' own struggles to make meaning of their CHD, impacts transition to adult care. Reducing the burden of CHD transition, without addressing disability, reinforces the disability-health paradox. Pairing dyadic interviews with ethnographic analysis of medical records is a novel method for including diverse subpopulations in pediatric research. Accessible health services are critical pediatric populations with medical complexity and lifelong conditions, especially as they transition to adult care.
