When should intensive care be provided for the extremely preterm infants born at the margin of viability? A survey of Australasian parents and clinicians

Alvin H K Tan; Antonia W Shand; Renate L Marsney; Timothy Schindler; Srinivas Bolisetty; Robert Guaran; Melinda Cruz; Sharon S W Chow; Kei Lui

doi:10.1111/jpc.15115

When should intensive care be provided for the extremely preterm infants born at the margin of viability? A survey of Australasian parents and clinicians

J Paediatr Child Health. 2021 Jan;57(1):52-57. doi: 10.1111/jpc.15115. Epub 2020 Aug 17.

Authors

Alvin H K Tan^{1

2}, Antonia W Shand^{3

4}, Renate L Marsney⁵, Timothy Schindler^{1

2}, Srinivas Bolisetty^{1

2}, Robert Guaran⁶, Melinda Cruz⁷, Sharon S W Chow⁵, Kei Lui^{1

2}

Affiliations

¹ Department of Newborn Care, Royal Hospital for Women, Sydney, New South Wales, Australia.
² School of Women's and Children's Health, University of New South Wales, Sydney, New South Wales, Australia.
³ Department of Maternal and Fetal Medicine, Royal Hospital for Women, Sydney, New South Wales, Australia.
⁴ Child Population and Translational Health Research, The University of Sydney, Sydney, New South Wales, Australia.
⁵ Australian and New Zealand Neonatal Network (ANZNN), University of New South Wales, Sydney, New South Wales, Australia.
⁶ New South Wales Pregnancy and Newborn Services Network (PSN), Sydney, New South Wales, Australia.
⁷ Miracle Babies Foundation, Sydney, New South Wales, Australia.

PMID: 32808379
DOI: 10.1111/jpc.15115

Abstract

Aim: This study aimed to explore clinician and parent opinions of risk limits on resuscitation and intensive care (IC) for extremely premature infants born at the margin of viability.

Methods: Two anonymous on-line surveys were conducted from August 2016 to January 2017. Survey participants were: (i) clinicians affiliated with neonatal intensive care units in Australia; and (ii) parents or individuals who expressed interest in premature babies through the Facebook page of Miracle Babies Foundation.

Results: A total of 961 responses were received. Among 204 clinicians, 52% were neonatologists, 22% obstetricians, 20% neonatal intensive care unit nurses and 4% were midwives. Among 757 parents, 98% had a premature baby. Only 75% of clinicians responded to the risk limits questions. Median mortality risk above which they would not recommend resuscitation/IC was 70% (interquartile range (IQR) 50-80%); major disability risk in survivors 60% (IQR 50-75%); and composite risk of mortality and major disability 70% (IQR 50-80%). All parents answered the risk limit questions. The median mortality risk for not planning resuscitation was 90% (IQR 60-90%); major disability risk in survivors 50% (IQR 30-90%); and composite risk 90% (IQR 50-90%). Most clinicians (82%) stated that decisions should be guided by parent opinions if there are uncertainties. Parents had varying perception of previous counselling, and 57% stated that both their viewpoint and doctor's predicted risk influenced their decision-making.

Conclusions: Clinicians and parents had different views on mortality and major disability risks when deciding on resuscitation/neonatal IC treatment. When there was uncertainty, both agreed on working together.

Keywords: extreme prematurity; intensive care; mortality and major disability; resuscitation.

MeSH terms

Australia
Critical Care
Decision Making
Female
Humans
Infant
Infant, Extremely Premature*
Infant, Newborn
Intensive Care Units, Neonatal
Intensive Care, Neonatal*
Parents
Pregnancy