Beyond survival: empowering adults with congenital heart disease through communication and co-designed education

Adults with congenital heart disease (ACHD) live with lifelong clinical uncertainty, recurrent interventions, and complex decision-making demands. As survival improves, optimal ACHD care increasingly requires approaches that extend beyond biomedical management to support patient empowerment and engagement. This review examines contemporary strategies to support patient empowerment and engagement in ACHD, with a particular focus on communication-based interventions, nurse-led education, and co-designed tools that facilitate shared decision-making. We synthesise contemporary evidence alongside clinical experience from specialist ACHD services. Key approaches include structured communication strategies such as agenda-setting, teach-back, and Question Prompt Lists (QPLs), including the "Ask Me Anything" (AMA) digital tool developed within a tertiary ACHD centre. These interventions may improve patient confidence, facilitate question-asking behaviour, and support more effective consultations. Nurse-led education programmes, transition-focused interventions, and routine psychosocial screening are discussed as integral components of an empowerment framework, particularly during periods of heightened vulnerability such as adolescence, pregnancy, and progression to heart failure. The role of patient-reported outcome measures (PROMs) is also considered, not only as outcome assessment tools but also as mechanisms to facilitate structured communication and shared reflection between patients and clinicians. Integrating educational, communicative, and psychosocial strategies within multidisciplinary ACHD care may strengthen continuity of care, improve patient engagement, and support shared decision-making across the lifespan.