Surveillance of Adolescents and Adults with Congenital Heart Disease in Massachusetts

Background and Purpose

Advances in our ability to diagnose and treat congenital heart defects (CHDs) have led to a growing population of adolescents and adults with CHDs. Many of these individuals have moderate to severe CHDs.

However, very little is known about this population of CHD survivors, since most CHD research and surveillance initiatives have concentrated on infants and younger children.

Proportions of Pediatric and Adult CHD Patients, 1965-2005

image of chart depicting Proportions of Pediatric and Adult CHD Patients, 1965-2005
Williams et al. Report of the NHLBI working group on research in ACHD. J am Coll Cardiol 2006;47:701-7 http://www.ncbi.nlm.nih.gov/pubmed/?term=16487831

Gaps in our knowledge include the exact number, demographic characteristics, health status and healthcare needs of these CHD survivors. Very little is known about how CHDs might affect:

  • Transitioning from childhood to adulthood and related health care;
  • Health and reproductive outcomes of women who are pregnant:
    • Congenital heart defects are the most common form of heart disease seen during pregnancy in the U.S.;
  • Health quality and function of middle-aged and older adults as they experience age-associated comorbidities.

As part of the Congenital Heart Futures Act (a component of the Affordable Care Act), the United States Centers for Disease Control (CDC) was given $2 million to study epidemiology and surveillance of adolescents and adults with congenital heart defects (http://www.cdc.gov/ncbddd/heartdefects/research.html). With a portion of the funding, they awarded three grants in Fall 2012 to study this topic and to pilot methods of surveillance of this population.

The Massachusetts Department of Public Health, in association with Boston Children’s Hospital and Massachusetts General Hospital, was awarded one of the grants to examine the prevalence, comorbidities, and service needs of adolescents and adults with CHD across the entire state, using existing data and records.

More Information


This information is provided by the Center for Birth Defects Research and Prevention within the Department of Public Health.