patient heart

More adults are living with congenital heart defects in the United States — creating the need for more health services and tracking systems to collect data for all ages, according to new research in the American Heart Association journal Circulation.

In the first contemporary assessment of people living with congenital heart defects in the United States based on factors such as age, sex and ethnicity, about 1.4 million adults and 1 million children were living with these medical conditions in 2010. Nearly 300,000 of them had severe heart defects.

Compared with estimates for 2000, these figures represent a 40 percent increase in the total number of people living with congenital heart defects in the United States and a 63 percent increase among adults.

Researchers extrapolated data from published estimates in Quebec, Canada. They assumed Quebec prevalence data on congenital heart defects was equal to similar sex and age data for U.S. non-Hispanic whites, then adjusted estimates to derive rates for blacks and Hispanics. About 1.7 million non-Hispanic whites live with congenital heart defects in the United States, compared to about 700,000 non-Hispanic blacks or Hispanics.

“This is a substantial population of adults in the United States who have survived infancy and childhood living with congenital heart defects,” said Suzanne Gilboa, Ph.D., an epidemiologist with the Centers for Disease Control and Prevention. “They need the appropriate care to have full and productive lives.”

Congenital heart defects are structural problems with the heart present at birth. They’re diagnosed in eight to 10 per 1,000 live births in the United States and are the most common type of birth defect.

Medical and surgical advances in the last 30 years have allowed more babies to survive to reach their adult years. Yet most patients need lifelong cardiac care and many don’t receive care as they transition to adulthood.

State surveillance systems in the United States track how many babies are born with congenital heart defects, but don’t continue to track long term.

“People used to think of congenital heart disease as a pediatric condition,” said Ariane Marelli, M.D., M.P.H., senior study author and professor of medicine at McGill University in Montreal. “There’s really no question now that congenital heart disease falls squarely in the realm of adult medicine. We need to have more congenital heart disease programs and more manpower to meet the needs of this population.”