Population-Based Outcomes Data for Counseling at the Margin of Gestational Viability

Abstract

Objective: To survey neonatologists as to how many use population-based outcomes data to counsel families before and after the birth of 22- to 25-week preterm infants.

Study design: An anonymous online survey was distributed to 1022 neonatologists in the US. Questions addressed the use of population-based outcome data in prenatal and postnatal counseling.

Results: Ninety-one percent of neonatologists reported using population-based outcomes data for counseling. The National Institute of Child Health and Human Development Neonatal Research Network Outcomes Data is most commonly used (65%) with institutional databases (14.5%) the second choice. Most participants (89%) reported that these data influence their counseling, but it was less clear whether specific estimates of mortality and morbidity influenced families; 36% of neonatologist felt that these data have little or no impact on families. Seventy-one percent reported that outcomes data estimates confirmed their own predictions, but among those who reported having their assumptions challenged, most had previously been overly pessimistic. Participants place a high value on gestational age and family preference in counseling; however, among neonatologists in high-volume centers, the presence of fetal complications was also reported to be an important factor. A large portion of respondents reported using prenatal population-based outcomes data in the neonatal intensive care unit.

Conclusion: Despite uncertainty about their value and impact, neonatologists use population-based outcomes data and provide specific estimates of survival and morbidity in consultation before and after extremely preterm birth. How best to integrate these data into comprehensive, family-centered counseling of infants at the margin of viability is an important area of further study.

Keywords: ethics; neonate; prematurity; prenatal outcomes.