Key Findings: Long Term Outcomes in Children with Congenital Heart Disease

In a new 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 http://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. Journal of Pediatrics. 2014 [epub ahead of print]
[Read Abstract ]

Heart Defects: CDC Activities

CDC is working to identify causes of congenital heart disease (CHD), find ways to prevent CHD, and improve the lives of those living with CHD. We do this through:

Surveillance or disease tracking:
- State programs: CDC funds and coordinates the Metropolitan Atlanta Congenital Defects Program (MACDP). CDC also funds 14 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.
- Adolescents and adults: CDC is working with three sites to track congenital heart disease among adolescents and adults in order to learn about their health issues and needs across the lifespan.

Research: CDC funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (to start with births in 2014). These studies work to identify factors that increase the risk for birth defects, including heart defects.
Collaboration: CDC provides technical assistance to the Congenital Heart Public Health Consortium , a unique collaboration that brings together families, experts, and organizations to address congenital heart disease.