Abstract
BACKGROUND: Research on parental understanding following prenatal counseling for congenital heart disease (CHD) is limited. We aimed to evaluate parental knowledge of their fetus' CHD diagnosis and congruence between physician's and parent's assessments of parental understanding. METHODS: Paired surveys of pediatric cardiologists and parents of fetuses requiring neonatal heart surgery assessed parental knowledge and perceived understanding of diagnosis, treatment and complications. Gwet's agreement coefficients (GAC) were used to examine congruence. RESULTS: There was good congruence between 40 participating parents and cardiologists regarding knowledge of the diagnosis (GAC 0.89), need for neonatal surgery (GAC 0.81), need for further surgeries and lifelong care (GAC 0.66 and 0.65). While cardiologists perceived parents understood risk of mortality and neurodevelopmental outcomes, parental knowledge was poor (GAC -0.04 and 0.05, respectively). CONCLUSION: For many aspects of counseling, parental knowledge is congruent with cardiologist's perceptions; however, communication gaps exist for knowledge of mortality and other longer-term outcomes.