REVIEWED BY

Emily K. Cripps
Neonatal Fellow
Neonatal Critical Care Unit, Mater Mothers Hospital, Brisbane, Australia
Neonatal and Paediatric Intensive Care Unit, Royal Hobart Hospital, Hobart, Australia
emily.cripps@ths.tas.gov.au

Peter A. Dargaville
Consultant Neonatologist
Department of Paediatrics, Royal Hobart Hospital, Hobart, Australia.
Menzies Institute for Medical Research, University of Tasmania, Hobart, Australia
peter.dargaville@ths.tas.gov.au

Naomi E. Spotswood
Consultant Neonatologist
Department of Paediatrics, Royal Hobart Hospital, Hobart, Australia.
Burnet Institute, Melbourne, Australia.
Department of Medicine, University of Melbourne, Melbourne, Australia
naomi.spotswood@ths.tas.gov.au

CORRESPONDING AUTHOR

Emily K. Cripps
Neonatal Fellow
Neonatal Critical Care Unit, Mater Mothers Hospital, Brisbane, Australia
Neonatal and Paediatric Intensive Care Unit, Royal Hobart Hospital, Hobart, Australia
emily.cripps@ths.tas.gov.au

MANUSCRIPT CITATION

Boland RA, Cheong JLY, Stewart MJ, Kane SC, Doyle LW. Disparities between perceived and true outcomes of infants born at 23-25 weeks’ gestation. Aust N Z J Obstet Gynaecol 2021; 1-8. PMID: 34687048

TYPE OF INVESTIGATION

Web-based survey

QUESTION

Do clinicians involved in perinatal care and counselling have an accurate understanding of actual rates of survival and major disability in infants born at 23-25 weeks’ gestation? Does the place of birth, gestational age of infant, clinician workplace or clinician discipline change perception? Has the perception of outcome changed in the last 10 years?

METHODS

• Design: Descriptive-normative survey of clinicians involved in perinatal care
• Allocation: Not applicable
• Blinding: Not applicable
• Study period: 23 July 2020 – 4 October 2020
• Setting: Tertiary and non-tertiary hospitals, newborn retrieval services across Victoria, Australia
• Participants:
  • Surveys were sent to:
    • The directors of the major tertiary obstetric and neonatal sites in Victoria as well as the neonatal retrieval service,
    • nursing and midwifery unit managers at 41 non-tertiary birthing centres and special care nurseries across Victoria,
    • consultant paediatricians at the non-tertiary sites,
    • one private obstetrician at a non-tertiary site.
  • Survey design:
    • Clinicians were asked to estimate (on a sliding scale 0-100%) the proportion of infants at 23, 24 and 25 weeks’ gestation surviving to 1 year, and the risk of major disability at school age.
    • Separate estimates were to be given for infants inborn in a tertiary centre, and outborn in a non-tertiary setting.
  • Outcomes:
    • The difference between perceived and actual rates of survival and major disability for infants born at 23-25 weeks’ gestation.
    • Influence of professional group and workplace on this difference.
    • Change over time (from 2010 to 2020) in the accuracy of clinicians’ estimates of survival and rate of major disability.
    • These estimates of survival and major disability were then compared with:
      • Infant survival rates for all live births at each week of gestation receiving active management in Victorian perinatal centres in the years 2014-2017.
      • Rates of major disability at 8 years of age, defined as an intelligence quotient (IQ) <-2SD relative to term-born controls, moderate or severe cerebral palsy, blindness, or deafness requiring hearing aids or worse. These data were sourced from Victorian infant collaborative study data for infants born in 1991-1992, 1995 and 2005.
    • Statistical analysis:
      • Linear regression with models fitted using generalised estimating equations to allow for the lack of independence of multiple responses from the same participant.
        • Differences related to birthplace (inborn vs outborn), gestational age, workplace of respondents and profession were examined by linear regression.
        • Examination of longitudinal trends used to compare accuracy of estimates at the two time points, focusing on data in relation to infants born at 24 weeks’ gestation.

MAIN RESULTS

Survey Responses

• 165 surveys were received: response rate of 28%* (165/591*)
  • Nursing/midwifery: 56% (75/134)
  • Paediatric: 24% (62/261)
  • Obstetricians: 6.4% tertiary (10/157), 4 total non-tertiary (*total surveyed not recorded)
  • Transport team:36% (14/39)
• Workplace setting:
  • Non-tertiary centres: 69 (42%)
  • Tertiary centres: 82 (50%)
  • Transport team: 14 (8%)
• Professional groups:
  • 75 (45%) nursing/midwifery
    • 32 (43%) neonatal nurse
    • 43 (57%) midwife/nurse educator/other
  • 62 (38%) paediatric
    • 39 (63%) consultant paediatrician/neonatologist
    • 23 (37%) fellow/registrar/other
  • 14 (8.5%) obstetric
    • 6 (43%) consultant obstetrician
    • 8 (57%) fellow/registrar/other
  • 14 (8.5%) transport team members
    • 8 (57%) neonatal nurse
    • 6 (43%) neonatal consultant/fellow

The perceived versus actual mean difference of survival and major disability

Professional groups

Professional workplace did not influence opinion. Non-tertiary clinicians were only included in the 2020 survey. The 2010 results by profession were not provided in these results.

CONCLUSION

Healthcare professionals across all disciplines who are involved in perinatal care are overly pessimistic in their perceptions of outcomes for infants born 23-25 weeks’ gestation. The disparity between perceived and true outcomes has widened over the last decade.

COMMENTARY 

Parents faced with the prospect of their baby being born at the lowest survivable gestations enter an unfamiliar world of uncertainties. Information which is accurate and delivered clearly is crucial for parents facing extremely preterm birth. Boland et al’s. survey of clinicians involved in the care of preterm infants and of mothers at high risk of preterm birth provides important insights into the perceptions of the perinatal workforce around outcomes following birth at 23-25 weeks’ gestation (1). Their data show that neonatologists, nurses, obstetricians and midwives underestimate the likelihood of survival and overestimate risk of major disability. This discrepancy between actual outcomes and clinicians’ perceptions of them is widening over time.

The study had low response rates, particularly from medical teams (obstetric <10% and paediatric/neonatal <25%) and non-tertiary sites. This makes it difficult to generalise its findings across professions due to a risk of personal bias skewing the results. Nonetheless, Boland et al.’s findings are congruent with similar studies which report similarly pessimistic views of outcomes for extremely preterm infants from the perinatal workforce (2,3). Further, given outcome data used in the analysis were from 15 to 29 years ago, this gap between perceived and true rates of survival without major disability may be even wider than this study reports.

The key concern these findings raise is that parents may receive incorrect information. Discussions about outcomes with families could ultimately change a decision from resuscitation and active intensive care to palliation, particularly for infants born in the zone of parental discretion where it is ethically legitimate for parents to make these high-stakes decisions for their child (4). State-wide guidance in Victoria, Australia encourages a shared decision-making approach for threatened preterm birth at 22 to 24 weeks gestation (5).

It is vital that shared decision-making establishes what is important to the family and incorporates their values into all decisions. In some situations, this may include the option of comfort care. The clinicians leading these discussions should be mindful that survival without major morbidity may not be the outcome that matters the most to parents(6). Some families, particularly those familiar with preterm birth or disability, may accept a greater degree of risk than their clinicians (7). When babies born on the borderline of viability enter the full intensive care journey, families request honesty, humility, hope and compassion (8, 9).

Boland et al (1) propose a simple way to improve access to current local outcome data via a phone application to allow more objective calculation of known risks attached to extremely preterm birth. Up-to-date prediction tools could be helpful to reduce misinformation and overcome personal bias. They should be used in conjunction with multidisciplinary input to inform shared decision-making processes. It is important that all clinicians involved in perinatal care examine their own biases, and how they influence interactions with families. While perhaps uncomfortable, by accepting that our perceptions may be inaccurate, we can ensure the information we share with families is honest, informed and meaningful.

FUNDING

None

CONFLICTS OF INTEREST

None

References:

1. Boland RA, Cheong JLY, Stewart MJ, Kane SC, Doyle LW. Disparities between perceived and true outcomes of infants born at 23-25 weeks’ gestation [published online ahead of print, 2021 Oct 22]. Aust N Z J Obstet Gynaecol. 2021;10.1111/ajo.13443. doi:10.1111/ajo.13443

2. Blanco F, Suresh G, Howard D, Soll RF. Ensuring accurate knowledge of prematurity outcomes for prenatal counseling. Pediatrics. 2005;115(4):e478-e487. doi:10.1542/peds.2004-1417

3. Ireland, S., Ray, R., Larkins, S., Woodward, L.Exploring implicit bias in the perceived consequences of prematurity amongst health care providers in North Queensland – a constructivist grounded theory study. BMC Pregnancy Childbirth 21, 55 (2021). https://doi.org/10.1186/s12884-021-03539-5

4. Gillam L. The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child. Clinical Ethics. 2016;11(1):1-8. doi:10.1177/1477750915622033

5. Safer Care Victoria. (2020). Extreme prematurity guideline, Clinical guidance. safercare.gov.au

6. Janvier A. Pepperoni pizza and sex. Curr Probl Pediatr Adolesc Health Care. 2011;41(4):106-108. doi:10.1016/j.cppeds.2010.11.002

7. Tan AHK, Shand AW, Marsney RL, Schindler T, Bolisetty S, Guaran R, et al. 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;57(1):52-57. doi:10.1111/jpc.15115

8. Young E, Tsai E, O’Riordan A. A qualitative study of predelivery counselling for extreme prematurity. Paediatr Child Health. 2012;17(8):432-436. doi:10.1093/pch/17.8.432

9. Janvier A, Lantos J, Aschner J, Barrington K, Batton B, Batton D et al. Stronger and More Vulnerable: A Balanced View of the Impacts of the NICU Experience on Parents. PediatricsSeptember 2016; 138 (3): e20160655. 10.1542/peds.2016-0655

EBNEO commentaries on manuscripts relevant to evidence-based neonatal practice are welcomed and published after a formal peer-review process. To learn more visit https://ebneo.org/author-instructions/ and contact Dr. Amy Keir amy.keir@adelaide.edu.au or Dr. Clyde J. Wright clyde.wright@cuanschutz.edu with questions.