Contemporary survival of adults with congenital heart disease

Survival data that are applicable to the current population of adults with congenital heart disease (CHD) are not available.

Using an alternative survival analysis with age as the primary time scale, we assessed the contemporary survival of adult patients with CHD.

Survival was assessed using prospective data of the national registry of adult patients with CHD of the Netherlands. Survival was stratified by severity and lesion, and compared with a standardised general population.

Mean age at inclusion was 37 years, and 49% of the study population was male. During a cumulative prospective follow-up of 90, 270 patient-years in 14, 327 patients, 535 deaths occurred. Median survival was 53.4 (95% CI 49.9 to 60.7), 75.4 (95% CI 72.9 to 79.1) and 84.1 (95% CI 81.9 to 87.0) years for patients with severe, moderate and mild lesions, respectively. Survival of most patients with mild lesions did not differ from the general population, while, as expected, survival of patients with severe and moderate lesions was substantially lower (<0.001).

The present study gives insight in the contemporary survival of adults with CHD. This may aid patient counselling, timing of interventions and future research.