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Updated: Jul 28, 2025
Modeling Encephalopathy of Prematurity Using Prenatal Hypoxia-ischemia with Intra-amniotic Lipopolysaccharide in Rats
Published on: November 20, 2015
Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond
L De Proost1,2,3,4, A de Boer4,5, I K M Reiss3
1Department of Obstetrics and Gynecology, Erasmus Medical Center, Rotterdam, The Netherlands.
Aim:
The 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.
Methods:
We conducted four 2-h online focus group interviews in the Netherlands.
Results:
Twenty-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.
Conclusion:
Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors and allows for discretion.
