ACHD Care Wheel: A Stakeholder- and Theory-Driven Framework to Improve Specialized Adult Congenital Heart Disease Care

Background: Patients with adult congenital heart disease (ACHD) experience significant gaps in guideline-recommended care, associated with higher morbidity and mortality compared to those without care gaps. We evaluated barriers and facilitators to specialized care to inform patient-centered solutions.

Methods: We purposively sampled ACHD patients and clinicians from UCSF and across the United States and conducted semi-structured interviews in 2023-2024. Patients were ≥18 years, spoke English or Spanish, and could provide informed consent; clinicians were cardiologists or other staff involved in ACHD care. Zoom interviews were conducted using Capability, Opportunity, Motivation, and Behavior (COM-B)-informed guides and were recorded, professionally transcribed, and translated when applicable. Data were analyzed using inductive coding and rapid qualitative analysis, with independent dual coding, consensus resolution, concurrent analysis, and member checking. Identified categories were subsequently mapped to the Theoretical Domains Framework and COM-B.

Results: We interviewed 54 participants (37 patients, 17 clinicians). For patients, the median age was 32 years; 57% were women, 62% were people of color, and 35% had gaps in care of ≥3 years. Findings were organized into six interdependent categories: healthcare system and institutional structure; knowledge and education; sources of support; personal development; identity and personal resources; and ACHD’s placement in one's life. Two novel findings emerged: a paradoxical facilitating role of parental language barriers and the complex impact of caregiver support on patients' independent care skills. We developed the ACHD Care Wheel, a theory-guided framework to support the design and evaluation of future interventions.

Conclusions: The ACHD Care Wheel is a stakeholder-derived, theory-grounded framework for developing and evaluating interventions to improve ACHD care. Interventions targeting the three priority categories (healthcare system and institutional structure, knowledge and education, and sources of support) are likely to produce effects across multiple domains simultaneously, offering a theoretically grounded path forward for this growing population.