Examining adaptive functioning in pediatric patients with congenital heart disease

There is limited understanding of adaptive functioning in young children with congenital heart disease despite ample evidence demonstrating neurodevelopmental impairment in this population and the relevance of adaptive functioning to independent living and quality of life. This study aims to describe adaptive functioning in young children with congenital heart disease. Participants (n = 104) with histories of congenital heart disease, ages 2-5 years, were clinically referred for outpatient cardiac neurodevelopmental evaluation at a large academic medical center between March 2020 and July 2024. English-monolingual and Spanish-bilingual participants and their caregivers were included in the sample. Retrospective data obtained through the center's Cardiac Neurodevelopmental Program's clinical registry included standardized measures of adaptive, developmental, and cognitive functioning. Descriptive and correlation analyses were conducted. Adaptive skills and cognitive abilities were mostly in the low average to below average ranges. Significant associations were established between adaptive skills and developmental and cognitive abilities. Lower adaptive skills were associated with the presence of a genetic syndrome, whereas higher adaptive skills were associated with higher parental education; further, higher conceptual skills were evidenced in females. Implications of the findings and opportunities for future directions are discussed.