Functional limitations and educational needs among children and adolescents with heart disease

Sherry L. Farr, Karrie F. Downing, Tiffany Riehle-Colarusso, Ginnie Abarbanell

Research output: Contribution to journalArticlepeer-review

17 Scopus citations


Objective: To examine how cognitive and motor limitations in children with heart disease are associated with education and participation in extracurricular activities. Design: Using 2009–2010 parent-reported data from the National Survey of Children with Special Health Care Needs (NS-CSHCN), we examined prevalence of five functional limitations (learning/concentration, communication, self-care, gross motor skills, and fine motor skills) by diagnosed heart disease status using chi-square tests and multivariable logistic regression. Among CSHCN with heart disease, we examined the associations between severity of each functional limitation and missing ≥11 days of school in the past year, receiving special education services, and interference with extracurricular activities. Results: CSHCN with heart disease (n = 1,416), compared to CSHCN without (n = 28,385), more commonly had “a lot” of difficulty in the five functional areas (P <.01; adjusted odds ratios: 1.8-3.3). Among CSHCN with heart disease, “a lot” of difficulty with learning/concentration was most common (35%), followed by communication (21%), self-care (14%), gross motor skills (12%), and fine motor skills (10%). Among CSHCN with heart disease, compared to those without, respectively, 27% and 15% missed ≥11 days of school, 45% and 29% received special education services, and 49% and 29% experienced interference with extracurricular activities (P <.01 for all). Level of difficulty with the five functional areas was associated with receipt of special education services and participation in extracurricular activities (P <.001). Conclusion: These results support the American Heart Association recommendations to screen children with congenital heart disease for age-appropriate development and provide services when needed.

Original languageEnglish (US)
Pages (from-to)633-639
Number of pages7
JournalCongenital Heart Disease
Issue number4
StatePublished - Jul 1 2018
Externally publishedYes


  • congenital heart defect
  • congenital heart disease
  • intellectual disability
  • motor skills
  • school absenteeism
  • special education

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Surgery
  • Radiology Nuclear Medicine and imaging
  • Cardiology and Cardiovascular Medicine


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