Patient- and Clinician-Solutions to Improve Specialized ACHD Care: A Theory-Based Approach

Background Adult congenital heart disease (ACHD) patients continue to face gaps in guideline-recommended care with ACHD specialists. We lack patient and clinician inputs to develop and implement behavior-change interventions to enhance guideline uptake. Objective This study aimed to describe stakeholder solutions to improve ACHD specialized care and conceptualize solutions utilizing behavior change frameworks. Methods This qualitative study uses the COM-B (Capability, Opportunity, Motivation, and Behavior) model and TDF (Theoretical Domains Framework) to understand patient behaviors and potential solutions to improve ACHD care. We focused on ‘patient engagement’ as the target behavior to improve specialized care. We conducted 45 to 60-minute semi-structured interviews with ACHD patients and clinicians (cardiologists and clinic staff). We used purposeful sampling to interview diverse patients based on care gaps, disease status, race/ethnicity, and geography. At least two independent coders conducted inductive and deductive coding, and we performed 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, 27% had less than a college education, 35% had ≥ 3 years of gaps in care, and 30% required ≥ 3 reminders to interview. We developed six interdependent categories of codes representing 36 sub-categories of determinants for patients’ engagement: 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. We identified two novel subcategories, care delivery with non-English speaking parents and “withdrawal of or lower” caregiver support, that were surprising enablers (not only barriers) to ACHD self-care. We developed a COM-B and TDF-guided framework to help understand how future interventions in the various patient engagement categories could support behaviors to improve ACHD specialized care. Conclusion Our novel stakeholder-derived, theory-driven ACHD patient engagement framework facilitates the development and evaluation of future interventions to improve ACHD specialized care. Interventions could target healthcare systems and institutional structures, provider and patient knowledge and education, and sources of patient support. Given the interdependence of the intervention categories, any single intervention program could support behaviors in more than one category.