First Report of Congenital Heart Disease Estimates in the United States

Bayesian Statistical Model Predicts RV Failure
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Approximately 12% of 2.4 million individuals living with congenital heart disease in 2010 had severe congenital heart disease.

In a recent prevalence study, researchers estimated that approximately 2.4 million people were living with congenital heart disease in the United States in the year 2010. The findings were published in Circulation.

Suzanne Gilboa, PhD, MHS, of the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention in Atlanta, and colleagues used recently published estimates of age-, sex-, and severity-specific prevalence of congenital heart disease in Quebec, Canada to determine the same prevalence in the United States within the non-Hispanic white population. They applied a race-ethnicity adjustment factor to derive congenital prevalence estimates for the US non-Hispanic black and Hispanic populations based on the non-Hispanic white estimates.

Of the approximately 2.4 million people estimated to be alive with congenital heart disease in the US in 2010 (approximately 1.4 million adults; 1 million children), approximately 12% of these individuals had severe congenital heart disease. Prevalence was slightly higher in the non-Hispanic white and Hispanic populations compared with the non-Hispanic black population.

“Given the relative sizes of the US population, however, the vast majority of individuals estimated to be living with congenital heart disease in the US are non-Hispanic white (approximately 1.7 million) compared with non-Hispanic black or Hispanic (approximately 700 000),” researchers noted.

They also found a slight predominance of females compared to males with the most striking difference among individuals between the ages of 25 to 44 years. Women in this age group had a prevalence of 6 per 1000 while men had a prevalence of 3.8 per 1000. This translated to approximately 247 000 women and 157 000 men.

However, these findings should be interpreted carefully in light of some potential methodological limitations. First, the Canadian input prevalence data were derived from administrative data in which congenital heart disease were identified using ICD-9 coding. Cases identified in this manner are more likely to be misclassified than those actively obtained via medical records review.

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It is important to note that despite the study’s limitations it is still the first report to provide a contemporary estimate number of people living with congenital heart disease in the US, stratified by age, sex, race/ethnicity, and disease severity. Researchers wrote that compared with population estimates generated for the year 2000, the current estimates represent a 40% increase in the total number of individuals with congenital heart disease and more than 60% increase in the adult population alone.

“Despite the fact that most congenital heart disease patients require lifelong cardiology care, data from a recent study indicated that over 40% of individuals with congenital heart disease reported a gap of at least 3 years in such care with the late teens being the most common age of the first gap,” researchers wrote.

They added that this observation corresponds to the typical time of transition from pediatric to adult medical care during which pediatric patients can be lost to follow-up.

The study results may help bolster 2 efforts essential to aiding the congenital heart disease population, which the researchers called an “emergent public health issue.” The first is planning for health services delivery to meet the needs of a growing adult population living with the disease and the second is the development of surveillance data across the lifespan to provide more accurate, empirical estimates across all age groups in the US.


Gilboa SM, Devine OI, Kucik JF, et al. Congenital heart defects in the United States: estimating the magnitude of the affected population in 2010. Circulation. 2016. doi: 10.1161/CIRCULATIONAHA.115.0919307.