Clinical assessment of neurobehavioral outcomes in infants and children with congenital heart disease

The prevalence of CHD, coupled with a dramatically improved rate of survival, means that more children enter the community as survivors. This creates a new challenge to understand the neurobehavioral profile of this group and respond with services to support their optimal development and long-term outcome. A distinctive neurodevelopmental outcome characterized by mild intellectual and language impairment, impaired executive functioning and disruptions of behavior including inattention, impulsivity and poor social skills has been documented. There is a need in every community for comprehensive research-informed clinical care and educational and therapeutic programs. This article focuses on recommendations regarding neurobehavioral assessment of toddlers to young adults with the goal of best supporting their neuropsychological development and optimal functioning at home, in school and the community. Recommendations cover suggested domains for assessment and measures for use as well as discussion of common psychoeducational challenges for this population.