Long Term Outcomes in Children with Congenital Heart Disease

In a 2014 study published in the Journal of Pediatrics, CDC researchers examined the impact of congenital heart disease (CHD) on a child’s daily life, other illnesses or conditions, and healthcare use. Researchers found that children with CHD are more likely to report worse health overall, to need more healthcare services, and to have other health conditions (e.g., autism, intellectual disability, or asthma), compared to children without CHD. This information will be helpful to parents and healthcare providers to ensure that children with CHD receive needed services. You can read the abstract of the article here. Read more below for a summary of findings from this article.

Main Findings from this Study:

• Compared to children without CHD, children with CHD were
  • 3 times more likely to report worse health in the last year
  • 3 times more likely to have missed more than 10 days of school or day care
  • More likely to need help with or to have had difficulty crawling, walking, or running, or to have needed special equipment for these activities

• Children with CHD were more likely to have other illnesses or conditions, like asthma, ear infections, and developmental disabilities (e.g., autism spectrum disorder or intellectual disability), compared to children without CHD.
  • As children with CHD got older, they were more likely to report a learning disability, Attention-Deficit/Hyperactivity Disorder or Attention Deficit Disorder (ADHD or ADD), or an intellectual disability.

• Children with CHD were 2 times more likely to have seen a medical doctor who treated a variety of illnesses in the last year compared to children without CHD.

About this Study:

• Researchers analyzed data from the National Health Interview Survey for the years 1997 to 2011. They compared children, ages 0 -17 years, diagnosed with CHD as reported by their parents or guardians to children without CHD.
• Researchers looked at different aspects of the child’s life including
  • Health status
  • Number of days of school missed
  • Special equipment needed
  • Problems with physical activity (e.g., walking, crawling)
  • Problems requiring more than 3 months of prescription medication
  • Other illnesses or conditions
    • Cerebral palsy
    • Sickle cell anemia
    • Asthma
    • Allergies
    • Ear infections
    • Autism/autism spectrum disorders
    • Attention-Deficit/Hyperactivity Disorder or Attention Deficit Disorder (ADHD/ADD)
    • Intellectual disability
  • Healthcare use
    • Number of emergency room visits
    • Home care
    • Number of doctor visits in the last year

More Information

To learn more about congenital heart disease, please visit https://www.cdc.gov/ncbddd/heartdefects/.

For recommendations and guidelines from the American Heart Association to screen children with CHD for developmental disability or delay, please see this article: http://www.ncbi.nlm.nih.gov/pubmed/22851541

Paper Reference

Razzaghi H, Oster M, Reefhuis J. Long-term outcomes in children with congenital heart disease: National Health Interview Survey. J Pediatr. 2015;166(1):119-124.
[Read Abstract]

Heart Defects: CDC’s Activities

The Centers for Disease Control and Prevention (CDC) works to identify causes of CHDs and ways to prevent them. We do this through:

1. Surveillance and Disease Tracking:
   1. CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP).  CDC also funds population-based state tracking programs. Birth defects tracking systems are vital to help us find out where and when birth defects occur and whom they affect.
   2. CDC funds projects to track CHDs across the lifespan in order to learn about health issues and needs among all age groups.
   3. CDC, in partnership with March of Dimes, surveyed adults with CHDs to assess their health, social and educational status, and quality of life. The survey is called CH STRONG, Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG. Read project updates from CH STRONG.
2. Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (NBDPS) (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS) (began with births in 2014). These studies are working to identify factors that put babies at risk for birth defects, including heart defects.
3. Collaboration:
   1. CDC is assessing states’ needs for help with CCHD screening and reporting of screening results. CDC helps states and hospitals better understand the cost and impact of CCHD screening.   CDC also promotes collaboration between birth defects tracking programs and newborn screening programs to improve understanding of the effectiveness of CCHD screening.
   2. CDC provides technical assistance to the Congenital Heart Public Health Consortium (CHPHC). The CHPHC is a group of organizations uniting resources and efforts in public health activities to prevent congenital heart defects and improve outcomes for affected children and adults. Their website provides resources for families and providers on CHDs.