Characterizing neurodevelopmental follow-up attendance of children with congenital heart disease.

backgroundCharacterize attendance at neurodevelopmental follow-up for congenital heart disease (CHD) from infancy to young adulthood, as well as identify individual, family, and neighborhood-level correlates of low attendance.

methodsPrimary caregivers (N = 578) of children with CHD aged 0-21 years in the United States, stratified into six age groups, reported whether their child had attended neurodevelopmental follow-up at various time points. Caregiver reports were also used to collect information on the child's clinical and family psychosocial characteristics. ZIP codes provided neighborhood-level information.

resultsOverall, 51% (n = 296/578) of children with CHD had attended at least one age-appropriate neurodevelopmental follow-up. Attendance relative to age-appropriate appointments decreased with age, with <3% aged 6-21 years attending 100% of age-appropriate follow-up. Low (<50% age-appropriate) attendance was associated (p < 0.05) with older child age, racial and ethnic minority group status of mother, more social support from extended family, shorter duration of first ICU stay, lack of grandparents' involvement in childcare, travel distance of ≥60 miles from pediatric cardiology center, limited economic and educational opportunities in the neighborhood, and biventricular diagnosis.

conclusionsThe findings underscore the necessity of targeted intervention, with a particular emphasis on the social determinants of health framework, to improve the attendance of children with CHD at neurodevelopmental follow-up. IMPACT: In a U.S. sample, primary caregivers reported that 51% of children with congenital heart disease attended at least one age-appropriate neurodevelopmental follow-up appointment. Attendance rates declined with age, and clinical factors like shorter initial ICU stay and biventricular diagnosis were associated with low attendance. Low attendance was also associated with non-clinical factors like maternal race and ethnicity, family social support, proximity to the cardiology center, and economic and educational opportunities in the neighborhood, highlighting the importance of taking social determinants of health into account while considering opportunities to increase neurodevelopmental follow-up attendance.