Adaptive functioning in adolescents with congenital heart disease referred for neurodevelopmental follow-up.

Limited outcome research so far suggests concerns about adaptive functioning in children with congenital heart disease (CHD). Given the importance of adaptive skills for functional independence, supporting progress in the high-risk CHD population could allow for timely identification and intervention as needed. The goal of the current study is to characterize adaptive functioning abilities in a high-risk clinical sample of adolescents with CHD. Participants (n = 109) included adolescents (ages 12–20; mean = 14 years) with high-risk CHD (i.e., cardiac surgery < 12 months) who were clinically referred for a cardiac neurodevelopmental evaluation between 2015 and 2020. Retrospective data was retrieved from a larger clinical registry in the Cardiac Neurodevelopmental Program and included standardized measures of adaptive, intellectual, and academic abilities. Descriptive, strengths and weaknesses, and correlational analyses were completed. Functional independence in this sample was below age expectations across six of the nine adaptive skill areas. Demographic and medical risk factors were not associated with adaptive outcomes. Lower adaptive skills were associated with two-ventricle CHD, higher service utilization, lower intellectual and academic abilities, and developmental diagnoses. The sample exhibited relative strengths in communication, leisure, and health and safety, and relative weaknesses in functional academics, self-direction, social, and home living skills. Findings support that adolescents with high-risk CHD typically followed by cardiac neurodevelopmental programs show delayed functional skills integral in the transition to adulthood. Avenues for supporting development of adaptive functioning skills are discussed.