What are we telling the parents of extremely preterm babies?

Aust N Z J Obstet Gynaecol. 2016 Jun;56(3):274-81. doi: 10.1111/ajo.12448. Epub 2016 Feb 24.


Background: Parent counselling and decision-making regarding the management of preterm labour and birth are influenced by information provided by healthcare professionals regarding potential infant outcomes.

Aim: The aim of this study was to determine whether perinatal healthcare providers had accurate perceptions of survival and major neurosensory disability rates of very preterm infants born in non-tertiary hospitals ('outborn') and tertiary perinatal centres ('inborn').

Materials and methods: A web-based survey was distributed to midwives, nurses, obstetricians and neonatologists working in non-tertiary and tertiary maternity hospitals, and the perinatal/neonatal emergency transport services in Victoria, Australia.

Main outcome measures: Estimates of survival rates at 24 and 28-weeks' gestation were compared with actual survival rates of a population-based cohort of 24 and 28-weeks' gestation infants, born free of lethal anomalies in Victoria in 2001-2009. Estimates of major neurosensory disability rates in 24 and 28-week survivors were compared with actual disability rates in 24 and 28-week children born in Victoria averaged over three eras: 1991-1992, 1997 and 2005.

Results: Response rates varied as follows: 83% of non-tertiary midwives, 4% of obstetricians, 55% of tertiary centre staff and 68% of transport team staff responded (total of 30%). Overall, respondents underestimated survival and overestimated major neurosensory disability rates in both outborn and inborn 24 and 28-week infants. Outborn infants were perceived to have much worse prospects for survival and for survival with major disability compared with inborn peers.

Conclusion: Many clinicians overestimated rates of adverse outcomes. These clinicians may be misinforming parents about their child's potential for a favourable outcome.

Keywords: counselling; extremely preterm infant; mortality; neurodevelopmental disability; outcomes.

MeSH terms

  • Communication
  • Counseling
  • Developmental Disabilities* / etiology
  • General Practitioners / statistics & numerical data*
  • Gestational Age
  • Hospitals, Maternity*
  • Humans
  • Infant
  • Infant, Extremely Premature*
  • Infant, Newborn
  • Live Birth
  • Midwifery / statistics & numerical data*
  • Obstetrics / statistics & numerical data*
  • Parents
  • Perception
  • Surveys and Questionnaires
  • Survival Rate
  • Tertiary Care Centers