Congenital Heart Defects in the United States Estimating the Magnitude of the Affected Population in 2010

Background —Because of advancements in care, there has been a decline in mortality from congenital heart defects (CHD) over the last several decades. However, there are no current empirical data documenting the number of people living with CHD in the United States (US). Our aim was to estimate the CHD prevalence across all age groups in the US in the year 2010. Methods —The age-, sex-, and severity-specific observed prevalence of CHD in Quebec, Canada in the year 2010 was assumed to equal the CHD prevalence in the non-Hispanic white population in the US in 2010. A race-ethnicity adjustment factor, reflecting differential survival between racial-ethnic groups through age 5 for persons with a CHD and that in the general US population, was applied to the estimated non-Hispanic white rates to derive CHD prevalence estimates among US non-Hispanic blacks and Hispanics. Confidence intervals for the estimated CHD prevalence rates and case counts were derived using a combination of Taylor series approximations and Monte Carlo simulation. Results —We estimated that approximately 2.4 million people (1.4 million adults, 1 million children) were living with CHD in the US in 2010. Nearly 300,000 of these individuals had severe CHD. Conclusions —Our estimates highlight the need for two important efforts: (1) planning for health services delivery to meet the needs of the growing population of adults with CHD and; (2) the development of surveillance data across the lifespan to provide empirical estimates of the prevalence of CHD across all age groups in the US.