Learning and Educational Needs for Children and Young Adults with Heart Defects

CDC research helps educators, parents, and healthcare providers ensure that children, teens, and young adults with heart defects receive needed services.

What Have Public Health Scientists Learned About Students with Heart Defects?

Many children with chronic health conditions like heart defects do well in school. However, some children living with heart defects may need extra attention in school to succeed. Public health scientists have learned that

• Children with heart defects may be more likely than children without heart defects to
  • have difficulty with learning, focusing, and communicating;
  • miss more than 10 days of school in one year; and
  • have trouble participating in sports or clubs.^{1, 2}

• Children with heart defects who don’t have any other birth defects are more likely to need special education services than children without heart defects. Certain conditions requiring special education needs are more common among children with heart defects:
  • intellectual disability;
  • problems with hearing or seeing;
  • developmental delay;
  • learning disability; and
  • limited alertness in school.^1,3

• Thanks to the advances in medical care, more young adults with heart defects are attending college. Healthcare providers, young adults, and their parents are encouraged to discuss transition planning. It’s important for students with heart defects to stay in specialty medical care for their heart during college and into adulthood.⁴

Understanding the learning and educational needs for children and young adults with heart defects is key to helping these students manage their health conditions and thrive in school.

Parents, Educators, and Healthcare Providers Can Work Together to Help Students with Heart Defects

These findings highlight the importance of developmental screening so that children with heart defects can get the support they need in school. Many children with educational concerns are not identified as early as possible. Parents, educators, and healthcare providers can work together to recognize academic obstacles and help students receive the educational and health services they need to succeed.

What is CDC Doing to Learn More About Children and Young Adults with Heart Defects?

Brighter academic futures for people living with heart defects are possible through tracking and research. CDC is working in various ways to better understand the long-term health and educational outcomes of people living with heart defects:

• Tracking Heart Defects Across the Lifespan
  • CDC funded six sites in 2019 and one additional site in 2020 for the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) to look at children, adolescents, and adults with heart defects over a 10-year time period.

• Surveying Adults with Heart Defects
  • In 2016, CDC launched a survey of young adults with heart defects. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) looked at the health, education, and quality of life for people living with heart defects. Read project updates from CH STRONG.

• Surveying Caregivers of Children with Heart Defects
  • In 2022, CDC funded three sites for the Population-based Surveillance of Outcomes, Needs, and well-beinG of Children and Adolescents with Congenital Heart Defects project (CHSTRONG-KIDS). The objectives of CHSTRONG-KIDS are to identify a population-based sample of children and adolescents with congenital heart defects and survey parents and caregivers about their child’s healthcare utilization, barriers to care, quality of life, social and educational outcomes, and transition of care from childhood to adulthood as well as needs and experiences of the caregivers.
• Analyzing Information from Several Sources
  • CDC scientists and researchers have learned about students with heart defects by looking at information from various sources, including state-level special education data, the Metropolitan Atlanta Congenital Defects Program (MACDP), the National Survey of Children’s Health, and the National Health Interview Survey.

 CDC Resources

• Living with a Congenital Heart Defect
• Concerned About Your Child’s Development? Learn the Signs. Act Early.
• Developmental Monitoring and Screening

Scientific References

1. 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.
2. Farr SL, Downing KF, Riehle-Colarusso T, Abarbanell G. Functional limitations and educational needs among children and adolescents with heart disease. Congenital Heart Disease. 2018; 13:633-639.
3. Riehle-Colarusso T, Autry A, Razzaghi H, Boyle CA, Mahle WT, Braun KV, Correa A. Congenital heart defects and receipt of special education services. Pediatrics. 2015 Sep 1;136(3):496-504.
4. Downing KF, Oster ME, Farr SL. Preparing adolescents with heart problems for transition to adult care, 2009-2010 National Survey of Children with Special Health Care Needs. Congenital Heart Disease. 2017 Jul; 12(4):497-506.