title: What are we telling the parents of extremely preterm babies?
abstract: 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.
  
  
  OBJECTIVE
  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').
  
  
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  Many clinicians overestimated rates of adverse outcomes. These clinicians may be misinforming parents about their child's potential for a favourable outcome.
authors.affiliation: Murdoch Childrens Research Institute, Parkville, Victoria, Australia.|Department of Obstetrics and Gynaecology, Royal Women's Hospital, University of Melbourne, Parkville, Victoria, Australia.|Paediatric Infant Perinatal Emergency Retrieval, Royal Children's Hospital, Parkville, Victoria, Australia.
authors.forename: Rosemarie Anne
authors.identifier: http://orcid.org/0000-0002-8127-2133
authors.initials: RA
authors.lastname: Boland
authors.affiliation: Murdoch Childrens Research Institute, Parkville, Victoria, Australia.|Department of Obstetrics and Gynaecology, Royal Women's Hospital, University of Melbourne, Parkville, Victoria, Australia.|Newborn Research Centre, Royal Women's Hospital, Parkville, Victoria, Australia.
authors.forename: Peter Graham
authors.initials: PG
authors.lastname: Davis
authors.affiliation: Murdoch Childrens Research Institute, Parkville, Victoria, Australia.|Department of Obstetrics and Gynaecology, Royal Women's Hospital, University of Melbourne, Parkville, Victoria, Australia.|Newborn Research Centre, Royal Women's Hospital, Parkville, Victoria, Australia.
authors.forename: Jennifer Anne
authors.initials: JA
authors.lastname: Dawson
authors.affiliation: Murdoch Childrens Research Institute, Parkville, Victoria, Australia.|Department of Obstetrics and Gynaecology, Royal Women's Hospital, University of Melbourne, Parkville, Victoria, Australia.
authors.forename: Lex William
authors.initials: LW
authors.lastname: Doyle
mesh_terms: D003142:Communication; D003376:Counseling; D002658:Developmental Disabilities / Q000209:etiology; D058005:General Practitioners / Q000706:statistics & numerical data*; D005865:Gestational Age; D006771:Hospitals, Maternity; D006801:Humans; D007223:Infant; D062071:Infant, Extremely Premature; D007231:Infant, Newborn; D050498:Live Birth; D008880:Midwifery / Q000706:statistics & numerical data*; D009774:Obstetrics / Q000706:statistics & numerical data*; D010290:Parents; D010465:Perception; D011795:Surveys and Questionnaires; D015996:Survival Rate; D062606:Tertiary Care Centers
keywords: counselling; extremely preterm infant; mortality; neurodevelopmental disability; outcomes