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

Abstract Background Patients with adult congenital heart disease (ACHD) experience significant gaps in guideline-recommended specialized care, leading to higher morbidity and mortality. We evaluated barriers and facilitators to specialized care, with particular focus on understanding how to design and evaluate holistic, patient-centered solutions. Methods We purposely sampled demographically and geographically diverse group of ACHD patients and clinicians in the United States. We conducted semi-structured interviews guided by the Capability, Opportunity, Motivation, and Behavior (COM-B) model and Theoretical Domains Framework (TDF) and analyzed using rapid qualitative analysis. Results We interviewed 54 participants (37 patients and 17 clinicians). The patient 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. Conclusion The ACHD Care Wheel is a stakeholder-derived, theory-grounded framework to develop and evaluate interventions to improve specialized 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 an efficient and theoretically grounded path forward for this growing population.