Associations of Physician Perspectives, Personal Choices, and Counseling for Severe Congenital Heart Defects.

OBJECTIVE

To assess whether physicians' perspectives of outcomes or personal choices are associated with prenatal counseling for termination of pregnancy (TOP) or perinatal hospice for severe congenital heart defects (CHDs).

METHOD: Multicenter survey of pediatric cardiologists and congenital heart surgeons in the United States, 2016-2018. The survey measured perspectives of CHD outcomes, personal choices/considerations, and prenatal counseling for TOP or perinatal hospice. Bivariate comparisons estimated associations between outcome perspectives, personal choices, and counseling.

RESULTS

Response rate was 77% (135/176); 47% (63/135) believed that single-ventricle portends good long-term quality of life or transplant-free survival. The majority (70%-90% depending on CHD type) would consider perinatal hospice for their own child, but a minority (2%-16% depending on CHD type) would choose perinatal hospice over TOP or postnatal intervention. Physicians who would consider TOP for themselves/their partner were more likely to counsel about TOP than physicians who would not consider TOP for themselves/their partner (99% vs. 67%, p < 0.001). There were no associations between institutional practice, outcome perspectives, personal consideration for hospice, and counseling practices.

CONCLUSION

Physician perspectives of single-ventricle outcomes remain guarded but were not associated with counseling. However, personal choices/considerations are associated with counseling practices; therefore, considering personal beliefs is crucial to help families make fully informed decisions.