Learning from those who thrive: protective factors and neuroimaging markers in adolescents with complex congenital heart disease and with a favorable neurodevelopmental profile

Abstract

ABSTRACT Patients with complex congenital heart disease (cCHD) are at risk for neurodevelopmental impairments, yet many patients develop normally. This study investigated associations between a favorable neurodevelopmental profile and protective factors, quality of life (QoL), resilience, and brain development. Adolescents with cCHD (n = 100) were prospectively enrolled. Neurodevelopmental profiles comprised IQ, executive functions, and behavior. Standardized neuropsychological tests and questionnaires were used to assess neurodevelopmental outcomes, family factors, QoL, and resilience. Clinical data were obtained from medical charts. Cerebral MRI was acquired. Specific neurodevelopmental profiles were identified by latent profile analysis and were associated with clinical and family factors, QoL and resilience, and MRI markers. We identified two distinct groups of neurodevelopmental profiles (favorable profile: n = 57, vulnerable profile: n = 43). The favorable profile group had significantly better neurodevelopmental outcome, better family functioning, and better parental mental health compared to the vulnerable profile group. Clinical factors were not significantly associated with profile group. The favorable profile group reported significantly better QoL and resilience and had larger total brain volumes. A positive family environment may be protective for long-term neurodevelopment and may outweigh the role of clinical factors. This study underlines the importance of family-centered care to promote favorable brain development and neurodevelopmental outcome.