Magnitude of Congenital Heart Defects in the United States

Study Questions:

What is the estimated number of people with congenital heart defects (CHD) residing in the United States in 2010, and how many of them have severe disease?

Methods:

This was an epidemiologic study that approximated the number of people with CHD living in the United States in 2010, based on assumptions and mathematical simulations that calculate data from the observed prevalence of CHD in Quebec, Canada, which is assumed to be equal to that of the non-Hispanic white population in the United States. Age, sex, and racial-ethnic estimates for the US population were derived from the US Census Bureau and racial-ethnic differences in CHD mortality in children were estimated from the Texas Birth Defects Registry. The methods used for calculations are summarized in the accompanying data supplement.

Results:

In 2010, approximately 1.4 million adults and 1 million children (<18 years old) with CHD resided in the United States, the majority being non-Hispanic whites (~1.7 million), with a slight female predominance. Approximately 300,000 (~12%) individuals with CHD had severe disease.

Conclusions:

These estimates are important for planning health services. There is a need to develop methods to collect data that will provide empiric estimates of CHD prevalence in the United States.

Perspective:

With improved survival, adults with CHD now outnumber children, given relatively stable birth rates, but increasing numbers of individuals maturing to adulthood. In the absence of empiric prevalence data, this elegant mathematical model highlights the need for resource allocation to support programs and services for this growing population. The female predominance in adults with CHD of child-bearing age emphasizes the importance of medical practitioners with expertise in adult CHD and maternal-fetal medicine, to address the special needs of this population (see Elkayam U, et al., J Am Coll Cardiol 2016;68:396-410).

Clinical Topics: Cardiac Surgery, Congenital Heart Disease and Pediatric Cardiology, Invasive Cardiovascular Angiography and Intervention, Cardiac Surgery and CHD & Pediatrics, Congenital Heart Disease, CHD & Pediatrics and Interventions, CHD & Pediatrics and Quality Improvement, Interventions and Structural Heart Disease

Keywords: Birth Rate, Cardiac Surgical Procedures, Epidemiologic Studies, Ethnic Groups, Heart Defects, Congenital, Pediatrics, Population Growth, Prevalence, Resource Allocation


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