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

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...

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Bibliographic Details
Published in:Acta Paediatrica 2023-09, Vol.112 (9), p.1926-1935
Main Authors: De Proost, L., Boer, A., Reiss, I. K. M., Steegers, E. A. P., Verhagen, A. A. E., Hogeveen, M., Geurtzen, R., Verweij, E. J. (Joanne)
Format: Article
Language:English
Subjects:
Adult
Age
Birth
Customization
Decision making
extreme prematurity
Female
Gestational Age
guideline development
Humans
Infant, Newborn
Infant, Premature
limit of viability
Middle Aged
Parturition
periviability guidelines
personalisation
Pregnancy
Premature Birth
Prognosis
Young Adult
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Summary: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.
ISSN:0803-5253
1651-2227
DOI:10.1111/apa.16866