Implementation of Developmental Screening Guidelines for Children with Congenital Heart Disease

Objectives To assess awareness and implementation among pediatric primary care providers of the 2012 American Heart Association (AHA) guidelines for the evaluation and management of developmental abnormalities in children with congenital heart disease (CHD). We hypothesized that children with CHD are not being provided neurodevelopmental screening and support according to the AHA guidelines. Study design An online survey was administered to licensed pediatric primary care providers in Minnesota (pediatricians = 530, family physicians = 1469) to evaluate awareness of the AHA guidelines, current screening practices, and barriers to implementation of these guidelines. Results A total of 326 providers (17% of 1911 successful e-mails) responded to the survey, which included 148 pediatricians (29% of 518 successful e-mails) and 178 family physicians (13% of 1393 successful e-mails). Overall, 202 providers (62%) reported caring for children with CHD. Among those caring for children with CHD, the most commonly reported reasons for neurodevelopmental referral were nonspecific to CHD. Presence of risks specific to children with CHD, such as history of cyanotic heart disease or open heart surgery as an infant, accounted for only 25% and 22% of the referrals, respectively. Only 21% of providers were aware of the guidelines, and only 7% received guidance from a pediatric cardiologist regarding neurodevelopmental screening in children with CHD. Conclusion There is need for further education of primary care providers on the developmental risks associated with CHD as well as increased involvement by the pediatric cardiology community to enhance the developmental outcomes of children with CHD.