Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age

L. De Proost; A. de Boer; I. K. M. Reiss; E. A. P. Steegers; A. A. E. Verhagen; M. Hogeveen; R. Geurtzen; E. J. (Joanne) Verweij

doi:10.1111/apa.16866

journal article Open Access Jun 15, 2023

Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age

L. De Proost

A. de Boer

I. K. M. Reiss E. A. P. Steegers A. A. E. Verhagen

M. Hogeveen R. Geurtzen

E. J. (Joanne) Verweij

Acta Paediatrica Vol. 112 No. 9 pp. 1926-1935 · Wiley

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Abstract

AbstractAimThe aim of the study was to explore the perspectives of adults born prematurely on guidelines for management at extreme premature birth and personalisation at the limit of viability.MethodsWe conducted four 2‐h online focus group interviews in the Netherlands.ResultsTwenty‐three participants born prematurely were included in this study, ranging in age from 19 to 56 years and representing a variety of health outcomes. Participants shared their perspectives on different types of guidelines for managing extremely premature birth. They agreed that a guideline was necessary to prevent arbitrary treatment decisions and to avoid physician bias. All participants favoured a guideline that is based upon multiple prognostic factors beyond gestational age. They emphasised the importance of discretion, regardless of the type of guideline used. Discussions centred mainly on the heterogeneity of value judgements about outcomes after extreme premature birth. Participants defined personalisation as ‘not just looking at numbers and statistics’. They associated personalisation mainly with information provision and decision‐making. Participants stressed the importance of involving families in decision‐making and taking their care needs seriously.ConclusionAdults born prematurely prefer a periviability guideline that considers multiple prognostic factors and allows for discretion.

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Details

Published: Jun 15, 2023
Vol/Issue: 112(9)
Pages: 1926-1935
License: View

Authors

L

L. De Proost

Department of Obstetrics and Gynecology Erasmus Medical Center Rotterdam The Netherlands; Department of Medical Ethics, Philosophy and History of Medicine Erasmus Medical Center Rotterdam The Netherlands; Department of Neonatology Erasmus Medical Center Rotterdam The Netherlands; Department of Obstetrics Leids University Medical Center Leiden The Netherlands

A

A. de Boer

Department of Obstetrics Leids University Medical Center Leiden The Netherlands; Department of Neonatology, Amalia Children's Hospital, Radboud UMC Radboud Institute for Health Sciences Nijmegen The Netherlands

I

I. K. M. Reiss

Department of Neonatology Erasmus Medical Center Rotterdam The Netherlands

E

E. A. P. Steegers

Department of Obstetrics and Gynecology Erasmus Medical Center Rotterdam The Netherlands

A

A. A. E. Verhagen

Department of Pediatrics, University Medical Center Groningen University of Groningen Groningen The Netherlands

M

M. Hogeveen

Department of Neonatology, Amalia Children's Hospital, Radboud UMC Radboud Institute for Health Sciences Nijmegen The Netherlands

R

R. Geurtzen

Department of Neonatology, Amalia Children's Hospital, Radboud UMC Radboud Institute for Health Sciences Nijmegen The Netherlands

E

E. J. (Joanne) Verweij

Department of Obstetrics Leids University Medical Center Leiden The Netherlands

Cite This Article

L. De Proost, A. de Boer, I. K. M. Reiss, et al. (2023). Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age. Acta Paediatrica, 112(9), 1926-1935. https://doi.org/10.1111/apa.16866

Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age

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