Listening to learn: translating qualitative insights from adults with congenital heart disease and heart failure into patient-centered care

Adults with congenital heart disease and heart failure (HF) face lifelong, complex challenges. Despite improved survival, current care models often overlook their emotional, social, and long-term planning needs. Existing health-related quality of life (HRQoL) tools frequently miss key domains relevant to adult congenital heart disease (ACHD) patients, such as psychological fatigue, family dependence, and unmet support needs. Standard metrics like NYHA class and LVEF offer limited insight into their lived psychosocial burden. To explore the lived experiences of ACHD patients with HF (ACHD-HF) and identify domains to inform development of patient-centered HRQoL tools and improvements in shared decision-making and care delivery.

Three focus groups (n = 22) and cognitive interviews (n = 12) were conducted with ACHD-HF patients at a UK specialist center. Data were analysed using template analysis, guided by predefined domains (physical, psychological, social, and long-term planning) and emergent themes. Five themes reflected unmet psychosocial and care needs: (i) mental exhaustion and cognitive fatigue, (ii) feeling misunderstood and emotionally invisible, (iii) the burden of lifelong family dependence, (iv) challenges with relationships, intimacy, and identity, and (v) uncertainty around end-of-life planning. Participants voiced the need for more meaningful communication, integrated psychological support, and structured opportunities to engage in care decisions.

Patient narratives provide critical insight into care quality. Incorporating underrepresented psychosocial domains into HRQoL assessment and service planning can promote more responsive, equitable, and emotionally informed ACHD-HF care.