Beyond just survival: updates on adult congenital heart disease care

Abstract Survival into adulthood is now the norm for individuals born with congenital heart disease, with over 90% of children reaching adult life. Yet for many, particularly those with complex lesions, childhood intervention does not equate to a cure. Adults with congenital heart disease (ACHD) face ongoing risks of haemodynamic complications, end-organ dysfunction, and premature morbidity. In this review, we present recent advances in ACHD care across five domains: lifelong care models, diagnostic techniques, management strategies, genetic and precision medicine, and machine learning. We highlight the pivotal role of specialized, multidisciplinary care in improving outcomes, and the need for structured transition programmes to ensure continuity from paediatric to adult services. Emerging priorities include reproductive counselling, exercise prescription, and psychosocial support. Advances in cardiovascular magnetic resonance imaging, electrophysiological mapping, and four-dimensional flow imaging now offer unprecedented anatomical and haemodynamic insights. Recent trials have demonstrated encouraging results for novel heart failure therapies and pulmonary vasodilators in lesion-specific subgroups, while transcatheter technologies continue to expand therapeutic options for patients with complex anatomy. Genetic testing and machine learning are beginning to reshape risk stratification and workflow efficiency, though challenges remain in their implementation. As this population ages and acquires new comorbidities, care models must evolve to move beyond just survival, but towards improving quality of life, preserving organ function, and anticipating future needs. This review aims to support clinicians and researchers in meeting these challenges and advancing the next era of ACHD care.