Diagnosis and Intervention Strategies to Address Neurodevelopmental and Psychosocial Challenges in School‐Aged Children With Congenital Heart Disease

n 2012, the American Heart Association (AHA) published the first Scientific Statement addressing the evaluation and management of neurodevelopmental outcomes in children with congenital heart disease (CHD), which was approved by the American Academy of Pediatrics. 1 It found that children with CHD are at increased risk for neurodevelopmental disorders and disabilities.A management algorithm was devised that stratified children with CHD on the basis of established risk factors, such as genetic syndrome and/or predisposition, fetal and perinatal factors, brain volumes, and surgical and perioperative factors, although all together these risk factors explain <50% of the variation in neurodevelopmental outcomes. 2Subsequent touchpoints for surveillance, evaluation, and management were recommended, and neurodevelopmental evaluation and reevaluation were characterized as essential steps to obtain appropriate interventions and optimize overall development for children with CHD.It also identified that further research is needed to refine high-risk criteria, study the effectiveness of interventions, and identify funding and reimbursement mechanisms to support the provision of neurodevelopmental evaluations and interventions.In 2018, the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), an international organization comprising multidisciplinary professionals working to improve neurodevelopmental and psychosocial outcomes for individuals with CHD, 3 convened working groups with the support of an R13 grant from the National Heart, Lung, and Blood Institute.Goals included to better delineate the current understanding of neurodevelopmental and psychosocial care of children with CHD and propose future directions for research.One working group set out to identify knowledge gaps with respect to the neurodevelopmental and psychosocial outcomes of patients with CHD. 4 It suggested that future investigations need to shift towards improving methods, measurement, and analyses of outcomes in specific CHD populations as well as identification of clinically meaningful outcomes for key stakeholders.