Parental Perspectives on Future Outcomes for Children Diagnosed With Fetal Neurological Conditions

Current literature on fetal neurological consultation contains limited input from families. We aimed to determine which potential future outcomes associated with prenatally diagnosed neurological conditions are the most important to parents.

We performed a cross-sectional discrete choice experiment with parents who had undergone fetal neurological consultation at two children's hospitals. Parents ranked the relative importance of potential future outcomes associated with fetal neurological conditions. A hierarchal Bayesian application of multinomial logistic regression provided item-based relative importance scores (0-100). We used descriptive statistics to characterize importance score distribution by outcome.

Fifty-six parents completed the survey, 54 (96%) of whom were mothers. All respondents had living children from the pregnancies for which they underwent fetal neurological consultation. Children were a median of 16 months old (interquartile range 8.5-30.5) at time of survey completion. Parents ranked the questions "Could my child's diagnosis shorten his or her life?" and "Will this diagnosis affect my child for the rest of his or her life?" as the most important. Seizures, vulnerability to other medical problems, trouble performing everyday activities, pain, difficulty eating and growing, and the child's happiness were also highly ranked. Importance scores for each outcome varied widely among parents.

We characterize the relative importance of potential future outcomes to parents of children with prenatally diagnosed neurological conditions and find that outcomes ranked the most important pertain to lifespan, duration of impact, seizures, function, and vulnerability to other medical problems. Parents vary widely in their ranking of outcomes, supporting counseling tailored to individual priorities.