Counseling Preferences of Expectant Parents With a Fetal Neurologic Diagnosis: A Scoping Review of the Literature

Abstract

Diagnosis and management of fetal neurologic conditions is evolving rapidly. This scoping review aims to synthesize existing literature characterizing parental preferences for fetal neurologic counseling. A literature search and screening of MEDLINE, Embase, and Web of Science databases resulted in 21 eligible articles. The most common fetal neurologic conditions studied included myelomeningocele (n = 6), anencephaly (n = 4), and Zika-related microcephaly (n = 3). Across conditions, parents valued receiving balanced prognostic information, support in decision making, and empathy from the care team. Findings also demonstrate unique counseling considerations for prenatal diagnosis families of myelomeningocele, the importance of recognizing the meaning of their pregnancy and fetus for families of children with anencephaly and holoprosencephaly, and early information needs for those with prenatally diagnosed Zika-related microcephaly. Future work should prioritize characterizing understudied perspectives in fetal counseling and defining the ways in which counseling impacts parental experience and well-being, as well as patient decision making for pregnancy and delivery management.