Fouke Ombelet, Ruben Willems, Steffen Fieuws, Eva Goossens, Katya De Groote, Werner Budts, Stéphane Moniotte, Michèle de Hosson, Liesbet Van Bulck, Julie De Backer, Lieven Annemans, Ariane Marelli, Philip Moons, Lieven Annemans, Werner Budts, Julie De Backer, Katya De Groote, Michèle de Hosson, Daniel De Wolf, Marc Gewillig, Eva Goossens, Chris Leyman, Stéphane Moniotte, Philip Moons, Fouke Ombelet, Agnes Pasquet, Thierry Sluysmans, Liesbet Van Bulck, Alexander Van De Bruaene, Ruben Willems
Abstract Aims Although international recommendations suggest follow-up care for adult congenital heart disease (ACHD) patients should be provided in either specialized ACHD care or non-specialized ACHD care by a general cardiologist, these guidelines are variably implemented based on local resources. We investigated levels of care used by ACHD patients and predictors and outcomes of specialized ACHD follow-up, non-specialized ACHD follow-up, no cardiac follow-up, and no follow-up. Methods and results We performed a longitudinal study in 10 459 patients across three hospitals in Belgium, covering 79 065 patient-years. The outcomes of interest were the occurrence of heart failure, arrhythmias, valvular problems, infective endocarditis, myocardial ischaemia, thromboembolic events, and pulmonary arterial hypertension. We used multivariable logistic regression to assess predictors of cardiac follow-up and multivariable Cox regressions with time-varying lagged effects to explore associations with outcome. Specialized ACHD care was observed in 19% of all patient-years, non-specialized ACHD follow-up in 25% of patient-years, non-cardiac follow-up in 53%, and no follow-up in 3%. While patients with complex defects are assumed to receive follow-up in specialized ACHD cardiac care, this was the case in only 52% of their patient-years. Male sex, genetic syndrome, and no intervention history were predictors for being in higher levels of follow-up. Follow-up in specialized ACHD care was protective for heart failure and myocardial ischaemia. Any cardiac follow-up was protective for myocardial ischaemia and thromboembolic events. Conclusion Both levels of specialized and non-specialized ACHD cardiac follow-up care were protective for certain clinical outcomes, highlighting the importance of cardiac follow-up in ACHD. Lay summary This study looked at how adults living with congenital heart disease in Belgium are monitored over time and how the type of follow-up care they receive relates to their health outcomes.Key finding 1: Over the total period studied (counted in patient-years, meaning 1 year of follow-up for one patient), only about one in five of these patient-years took place in specialized congenital heart clinics. Even among those with the most complex heart conditions, only around half received continuous follow-up in specialized congenital heart disease centres. Many adults instead received care from general cardiologists and non-cardiac doctors or sometimes did not have routine follow-up.Key finding 2: Adults who received regular cardiac follow-up—especially in specialized congenital heart disease centres—were less likely to develop serious problems such as heart failure, heart attacks, or blood clots, compared with those who had no follow-up.