Preventing cardiovascular complications in adults with congenital heart disease: predictors and outcomes of the levels of follow-up care
Bibliographic record
Abstract
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.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".