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Objectives: To determine whether pediatric cardiologists and parents of older children with congenital heart disease (CHD) share similar expectations regarding the education and counseling that should be provided to parents of children with CHD in both the prenatal and neonatal period., Design: Consenting parents of older children with CHD (age >3 years) and cardiologists ranked the importance of education topics on a scale of 1 (unimportant) to 10 (very important). The rankings of parents and cardiologists were compared using Student's t-test., Results: We had 38 cardiologists and 41 parents complete the questionnaire. There was a statistically significant difference in rankings between cardiologist and parents of children with CHD (P<0.03). Parents consistently ranked topics as more important than cardiologists with a mean difference in rank score of 0.85 ±0.3. In the prenatal period, the most significant differences between parents and cardiologists were noted for information related to the child's quality of life. For neonatal counseling, the most significant differences were noted for information regarding follow-up care and the parent's ability to describe the child's CHD to medical personnel., Conclusion: Parents of older children with CHD would prefer to receive more counseling and education in the prenatal and newborn period than cardiologists perceive is wanted., (© 2012 Wiley Periodicals, Inc.)

Background: This study aimed to evaluate the impact of prenatal diagnosis on parental understanding of congenital heart disease (CHD) in newborns., Methods: Consenting parents of newborns with CHD answered questions about the cardiac lesion, surgical repair, follow-up management, risk for CHD in future children, and maternal education before neonatal intensive care unit (NICU) discharge. A total understanding score was calculated (0-10) as the sum of five subscores: physician score, CHD score, surgery score, follow-up score, and reproduction score. Each category was scored as 0 (none correct), 1 (some correct), or 2 (all correct). The prenatal and postnatal diagnoses scores were compared., Results: From June 2006 to November 2006, 50 families completed the questionnaire. Of these 50 families, 26 reported a prenatal diagnosis. The mean infant age when the parents were approached was 17.3 +/- 13.3 days. The summary understanding score for the entire group was 6.3 +/- 2.4 of 10. Multivariate regression analysis demonstrated a difference in scores between prenatal and postnatal diagnosis groups (p = 0.02) when control was used for maternal education. Prenatal diagnosis and maternal education (p < 0.01) had independent effects on the score., Conclusion: Prenatal diagnosis increases parental understanding of neonatal CHD. Nevertheless, parental understanding remains suboptimal.