Parental Understanding After Prenatal Cardiology Consults for Normal Fetal Echocardiogram and Severe Congenital Heart Disease

Background: Congenital heart disease (CHD) is the most common congenital malformation worldwide and may require lifelong care. Early detection leads to improved care of children with CHD. Thus, fetal echocardiogram is indicated when obstetric screening is abnormal or there is increased risk of CHD. Prenatal cardiology consults provide an opportunity to educate parents on results and limitations of fetal echocardiogram and help them prepare for their future with their child. Limited data exists to assess successful knowledge transfer from pediatric cardiologists to parents during prenatal consults.

Methods: This is a prospective questionnaire based descriptive study at a single tertiary referral center aiming to assess parental understanding and satisfaction after prenatal consult with a pediatric cardiologist. After prenatal consults, surveys were administered to consenting pediatric cardiologists and two groups of parents: (1) those with a normal fetal echocardiogram and (2) those receiving a diagnosis of single ventricle lesion or tetralogy of Fallot, two severe forms of CHD. Surveys assessed transfer of knowledge, perceived parental understanding, satisfaction with the consult, and anxiety scores.

Results: Surveys from 50 parents who received a normal fetal echocardiogram result, and their pediatric cardiologists showed that 26% of parents did not understand that their infant could still have heart defects after a normal result, even though 100% of cardiologists reported explaining this limitation during prenatal consult (Fig 1). Also, 18% of parents did not understand their follow-up recommendations (Fig. 2A). Spanish as preferred language and education level were associated with decreased understanding of limitations of a normal echocardiogram (Fig. 1B, 1C) and follow-up recommendations (Fig. 2B, 2C).
Similarly, preliminary data from 7 parents expecting an infant with severe CHD and their pediatric cardiologists showed that 15% of parents (n=1) did not understand the name and description of the heart lesion. 29% of parents (n=2) did not understand that their infant would require neonatal admission immediately after birth. Lastly, 57% of parents (n=4) did not understand their higher risk for fetal CHD in future pregnancies. However, all parents expecting an infant with severe CHD understood when cardiac surgery would be required after birth.
Despite these knowledge deficits, most pediatric cardiologists and parents (95% and 99% respectively) assessed parental understanding as good and reported satisfaction with prenatal consults. All parents thought the amount of information was “just right” and felt they had enough time to ask questions.

Conclusion: Despite overall satisfaction and comprehension reported by both parents and physicians, a substantial number of parents did not fully understand information provided during prenatal consults for both normal fetal echocardiogram and severe CHD. Further work is needed to improve knowledge transfer to parents during prenatal consults with pediatric cardiologists regardless of the complexity of the information provided.