Neurodevelopmental condition count, functional difficulties, and care-coordination gaps among U.S. children with caregiver-reported congenital heart conditions: a cross-sectional NSCH study, 2020-2024

Abstract Background Children with congenital heart disease often receive care across cardiology, primary care, developmental, rehabilitation, and educational services. We examined whether the number of current neurodevelopmental diagnoses and the number of functional difficulties were associated with care-coordination gaps among U.S. children with caregiver-reported congenital heart conditions. Methods We analyzed pooled 2020–2024 National Survey of Children's Health data in a cross-sectional study of children aged 6–17 years. A congenital heart condition was defined by caregiver report of a heart condition that was present at birth. The primary outcome was failure to receive at least one needed element of effective care coordination among children who needed coordination. Survey-weighted modified Poisson models estimated adjusted prevalence ratios (aPRs) for neurodevelopmental condition count and age-applicable functional difficulty count, each categorized as 0, 1, or 2 or more. Results Among 3,830 children meeting the congenital heart condition definition, 2,788 needed care coordination and had a classifiable outcome. The weighted prevalence of care-coordination failure in this domain was 40.8% (95% confidence interval [CI], 37.1%-44.6%). In separate models, both condition count and functional difficulties were associated with higher failure prevalence. In the joint model, neurodevelopmental estimates included the null, whereas functional difficulties remained associated with failure (one difficulty: aPR, 1.77; 95% CI, 1.37–2.28; 2 or more difficulties: aPR, 2.31; 95% CI, 1.78–3.01). The same pattern was present after restriction to children with a current heart condition. Conclusions Functional difficulties identified children whose caregivers reported more gaps in needed care coordination. Assessment of everyday function may add useful information when services span medical, developmental, rehabilitation, and educational settings.