Preventing cardiovascular complications in adults with congenital heart disease: predictors and outcomes of the levels of follow-up care - Report - MDSpire
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Preventing cardiovascular complications in adults with congenital heart disease: predictors and outcomes of the levels of follow-up care
Mitigating Cardiovascular Risks in Adults with Congenital Heart Disease
Overview
This longitudinal study of 10,459 adults with congenital heart disease (ACHD) in Belgium found that only 19% of patient-years involved specialized ACHD care, with many patients receiving non-specialized or no cardiac follow-up. Specialized ACHD follow-up was associated with reduced risks of heart failure and myocardial ischemia, while any cardiac follow-up lowered risks of myocardial ischemia and thromboembolic events.
Background
The adult congenital heart disease population is growing and aging, increasing demands on healthcare resources. Specialized ACHD care centers have been established to provide tailored follow-up, but implementation of guideline-recommended care varies. Prior evidence suggests that ACHD specialist care reduces mortality and major cardiac events compared to general cardiology or no follow-up. However, comprehensive data on levels of follow-up, predictors of care allocation, and associated clinical outcomes remain limited.
Data Highlights
Level of Follow-Up Care
Percentage of Patient-Years
Specialized ACHD Care
19%
Non-Specialized ACHD Follow-Up
25%
Non-Cardiac Follow-Up
53%
No Follow-Up
3%
Key Findings
Only 19% of total patient-years were managed in specialized ACHD care, despite guidelines recommending this level for complex cases.
Among patients with complex congenital defects, only 52% of patient-years involved specialized ACHD follow-up.
Male sex, presence of genetic syndromes, and no history of cardiac intervention predicted higher likelihood of receiving specialized or non-specialized cardiac follow-up.
Specialized ACHD care was protective against heart failure and myocardial ischemia.
Any cardiac follow-up (specialized or non-specialized) reduced the risk of myocardial ischemia and thromboembolic events.
Clinical Implications
These findings emphasize the critical importance of ensuring regular cardiac follow-up for adults with congenital heart disease, particularly in specialized ACHD centers. Clinicians should prioritize referral and retention of patients, especially those with complex defects, in specialized care to reduce the incidence of serious cardiovascular complications. Additionally, even non-specialized cardiac follow-up confers protective benefits compared to no follow-up, underscoring the need for consistent monitoring.
Conclusion
Regular cardiac follow-up, especially within specialized ACHD care, is associated with improved cardiovascular outcomes in adults with congenital heart disease. Efforts to increase access and adherence to specialized follow-up could mitigate long-term morbidity in this growing patient population.
References
Belgian Congenital Heart Disease Study Group 2024 -- Mitigating Cardiovascular Risks in Adults with Congenital Heart Disease
by 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, BELCODAC consortium, 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
