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

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.