Chronic Disease Burden After Congenital Heart Surgery: A 47‐Year Population‐Based Study With 99% Follow‐Up

BACKGROUND: Postoperative morbidity is an increasingly important outcome measure of patients who have undergone congenital heart surgery (CHS). We examined late postoperative morbidity after CHS on the basis of patients’ government‐issued medical special reimbursement rights. METHODS AND RESULTS: Between 1953 and 2009, 10 635 patients underwent CHS at <15 years of age in Finland. We excluded early deaths and mental disabilities. Noncyanotic and cyanotic defects were divided into simple and severe groups, respectively. We obtained 4 age‐, sex‐, birth time–, and hospital district–matched control subjects per patient. The Social Insurance Institution of Finland provided data on all medical special reimbursement rights granted between 1966 and 2012. Follow‐up started at the first operation and ended at death, date of emigration, or December 31, 2012. A total of 8623 patients met inclusion criteria. Follow‐up was 99.9%. A total of 3750 patients (43%) required special reimbursements rights for a chronic disease. Cardiovascular disease was the most common late morbidity among patients (28%), followed by obstructive pulmonary disease (9%), neurologic disease (3%), and psychiatric disease (2%). Heart failure (simple hazard ratio [HR], 56.3 [95% CI, 35.4–89.7]; severe HR, 918.0 [95% CI, 228.9–3681.7]) and arrhythmia (simple HR, 11.0 [95% CI, 7.1–17.0]; severe HR, 248.0 [95% CI, 61.3–1002.7]) were the most common cardiovascular morbidities. Hypertension was common among patients with coarctation of the aorta (13%; incidence risk ratio [RR], 8.9; 95% CI, 7.5–10.7). Psychiatric disease was more common among simple defects, particularly ventricular septal defects. CONCLUSIONS: Chronic cardiac and noncardiac sequelae are common after CHS regardless of the severity of the defect, underscoring the importance of long‐term follow‐up of all patients after CHS.