Lifetime Prevalence of Congenital Heart Disease in the General Population From 2000 to 2010

Study Questions:

What is the prevalence of congenital heart disease (CHD) in the general population?


The Quebec CHD database is derived from administrative databases including physician’s services and drug claims, hospital discharge summary databases, and the Quebec Health Insurance Board and Death Registry. The database contains 28 years of longitudinal data of all patients with CHD from 1983-2010. Latent class Bayesian models were used to obtain point and interval prevalence estimates of CHD in the first year of life, children >18 years of life, and adults.


A total of 107,559 CHD patients were identified over the study period. The total population in Quebec in 2010 was 7,929,365, including 1,523,722 children and 6,405,643 adults. From 1998 to 2005, the prevalence of CHD was 8.21/1,000 live-births (95% confidence interval [CI], 7.47-9.02). In 2010, overall prevalence of CHD was 13.11/1,000 (95% CI, 12.43-13.81) in children and 6.12/1,000 (95% CI, 5.69-6.57) in adults. The CHD prevalence increased by 11% in children and 57% in adults from 2000-2010. By 2010, adults accounted for 66% of the entire CHD population.


The population of adults with CHD has risen rapidly, now accounting for approximately two-thirds of patients with CHD. These data will be helpful in allocating resources to the care of the growing adult CHD population.


This study provides a contemporary estimate of the number of CHD patients present within the population, with a particular focus on adults with CHD. Although this manuscript presents data from a single Canadian province, Quebec has a stable population and the study should have reasonable generalizability. Additionally, the reported birth prevalence in this study is in line with previous estimates in the United States and other industrialized nations. It is striking that two-thirds of patients with CHD are now adults, particularly in light of the paucity of trained adult congenital specialists. It is hoped that these data will inform allocation of resources to the care of this patient population, training of practitioners, and development of high quality centers for the care of adults with CHD. The manuscript also reinforces the need for robust databases in the United States to identify and track individuals with CHD.

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