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

Sherry L. Farr1, Karrie F. Downing1,2, Tiffany Riehle-Colarusso1, Ginnie Abarbanell1,3

1 National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia, USA
2 Oak Ridge Institute for Science and Education, Oak Ridge, Tennessee, USA
3 Division of Pediatric Cardiology, Department of Pediatrics, Washington University School of Medicine/St. Louis Children’s Hospital, St. Louis, Missouri, USA

* Corresponding Author: Sherry L. Farr, 4770 Buford Highway, MS E-86, Atlanta, GA 30341. Email:

Congenital Heart Disease 2018, 13(4), 633-639.


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.


Cite This Article

Farr, S. L., Downing, K. F., Riehle-Colarusso, T., Abarbanell, G. (2018). Functional limitations and educational needs among children and adolescents with heart disease. Congenital Heart Disease, 13(4), 633–639.

This work is licensed under a Creative Commons Attribution 4.0 International License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
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