Increased longevity in adults with congenital heart disease and the need for 'extended transition' of care

A new population of adolescents and young adults has emerged over the last decades, surviving congenital heart disease (CHD) thanks to early surgery and improvements in medical care, whose numbers now exceed those of paediatric patients. The acronym ‘GUCH’ (Grown Up Congenital Heart), proposed by Jane Somerville, has been widely used in Europe to define this growing population, now superseded by ‘adult CHD’ (ACHD). Due to their improved longevity, it is common to encounter ACHD patients who are 50 years of age or older, a scenario hard to predict in the early days of CHD management. These novel opportunities, however, also imply unique challenges as the prevalence of arrhythmias and heart failure, the most common complications in adults with CHD, increases with age. Surgeries and interventional procedures performed in childhood, despite indisputable benefits in survival and quality of life, rarely represent a ‘cure’. Residual defects and/or late sequelae are common and require timely interventions, following the indications provided in guidelines and consensus documents.1,2 Furthermore, ACHD individuals are disproportionately exposed to acquired conditions such as coronary heart disease, due to myriad reasons including coronary artery anomalies (both congenital and secondary to surgery) and chronic inflammation. While managing these conditions in older patients falls under the responsibility of adult cardiologists, the rarity and peculiarity of ACHD complications often require skills and cultural background that are exclusive to paediatric cardiologists/ACHD specialists. Thus, there is an emerging unmet need mandating a shift in management programmes, which are only beginning to gain attention in the literature.1 As we still struggle to provide appropriate transition from paediatric to adult care and a non-negligible number of patients with CHD are lost to follow-up after adolescence, we must now consider the emerging need for structural transition programmes which may span beyond early adulthood. Hence, we propose the concept of an ‘extended transition’ of care combining multidisciplinary skills to manage longterm CHD complications and promote patient empowerment in cardiovascular prevention