Research Matters: The Importance of CHD Surveillance

For the month of October, CCHD will be focusing on the theme of Research. In the first post of our series, Dr. Matt Oster provides an overview of a recent study that estimates the prevalence of CHD across all age groups in the United States and highlights the importance of surveillance in improving outcomes for CHD across the lifespan.

 

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

By Matt Oster, MD, MPH

Congenital heart disease (CHD) is the most common and critical birth defect. Medical research has led to groundbreaking advances in identification and treatment of CHD. While we have learned enough to improve the survival rate to where most babies born with CHD will live to adulthood, there is still so much we don’t know.

Despite how common, critical, and costly CHD is, the understanding of the public health impact of CHD is surprisingly limited. In fact, we cannot accurately answer the basic question of “How many people with CHD are currently living in the U.S.?”

The American Heart Association, in their journal Circulation, recently published a study, Congenital Heart Defects in the United States: Estimating the Magnitude of the Affected Population in 2010, that mapped Canadian CHD statistics onto the U.S. population. The study’s main findings as outlined in the Centers for Disease Control and Prevention (CDC) Key Findings summary included:

• Approximately 2.4 million people were estimated to be living with a CHD in the United States in 2010. About 1 million of those were children under the age of 18 years and about 1.4 million were adults age 18 years and older.

• About 12% (289,000 people) were estimated to have a severe CHD.

• There were slightly more women (1,260,000) than men (1,163,000) living with a CHD in the United States.

However, the authors of the study also draw these additional conclusions –

Our estimates highlight the need for two important efforts:

• Planning for health services delivery to meet the needs of the growing population of adults with CHD.
• The development of surveillance data across the lifespan to provide empirical estimates of the prevalence of CHD across all age groups in the US.

First authorized in 2010 by the Congenital Heart Futures Act, the Centers for Disease Control and Prevention and the National Institutes of Health have begun to take steps to address this burden, needing additional resources to continue and expand their efforts. Continued federal investment is necessary to provide rigorous epidemiological and longitudinal public health surveillance and public health research on infants, children, adolescents and adults to better understand CHD at every age, improve outcomes and reduce costs.

Efforts by patient advocacy groups such as the Conquering CHD are essential to ensure the further development of systems to provide surveillance data to better understand CHD across the lifespan.

Dr. Oster is a pediatric cardiologist at Sibley Heart Center Cardiology at Children’s Healthcare of Atlanta. He holds Emory appointments of Assistant Professor of Pediatrics in the School of Medicine and Assistant Professor of Epidemiology in the School of Public Health as well as an appointment as a medical officer at the CDC’s National Center on Birth Defects and Developmental Disabilities. He earned his MD at the University of Pennsylvania School of Medicine and his MPH in epidemiology at Emory University Rollins School of Public Health. He completed residency training in pediatrics at the University of California-San Francisco and fellowship training in pediatric cardiology at Emory University. When not seeing patients, he serves as director of the Children’s Cardiac Outcomes Research Program at Sibley Heart Center. His primary research interests include the epidemiology of CHD and long-term outcomes for patients with CHD.