Survival without neurodevelopmental impairments among children with congenital heart disease at school age

Background: Children with complex congenital heart disease (cCHD) are at risk for neurodevelopmental impairments (NDI). This study aims to examine the proportion of school-age children with cCHD who exhibit no NDI and to identify protective factors. Methods: Outcomes of five neurodevelopmental domains were assessed longitudinally in children with cCHD. For this retrospective analysis of prospectively collected data, survival without impairments was defined as scores within 1 SD or above 10 th percentile, for each domain. Regression analyses were conducted to identify protective factors and to investigate associations between number of impaired domains and the need for therapies and educational support. Results: Mean outcomes were within the normal range except for motor skills ( z = −1.5, SD = 1.6). At age 10, 77.9% of 113 children showed impairments in at least one domain; only 22.1% had none. Having impairments in more domains was associated with higher rates of educational support ( p = 0.04). Higher socioeconomic status (SES) ( p = 0.02) and motor ( p = 0.004) scores at 4 years predicted better outcomes. Conclusions: Despite mostly normal average outcomes, only one quarter of children with cCHD remain free of NDI by age 10. Higher SES and early motor functions predict survival without impairments, highlighting the importance of ongoing monitoring and intervention. Impact: Only one quarter of children born with complex congenital heart disease remain free of neurodevelopmental impairments at school age. 42.5% of school-age children with complex CHD show neurodevelopmental impairments in multiple domains, highlighting the need for ongoing monitoring and intervention to improve outcome. Socioeconomic status and early motor outcomes predict later survival without neurodevelopmental impairments.