{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,30]],"date-time":"2026-09-30T01:46:22Z","timestamp":1790732782010,"version":"4.1.0"},"reference-count":54,"publisher":"Wiley","issue":"9","license":[{"start":{"date-parts":[[2023,6,15]],"date-time":"2023-06-15T00:00:00Z","timestamp":1686787200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Acta Paediatrica"],"published-print":{"date-parts":[[2023,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Aim<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted four 2\u2010h online focus group interviews in the Netherlands.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Twenty\u2010three participants born prematurely were included in this study, ranging in age from 19 to 56\u2009years 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 \u2018not just looking at numbers and statistics\u2019. They associated personalisation mainly with information provision and decision\u2010making. Participants stressed the importance of involving families in decision\u2010making and taking their care needs seriously.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors and allows for discretion.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/apa.16866","type":"journal-article","created":{"date-parts":[[2023,6,6]],"date-time":"2023-06-06T18:04:30Z","timestamp":1686074670000},"page":"1926-1935","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":12,"title":["Adults born prematurely prefer a periviability guideline that considers multiple prognostic factors beyond gestational age"],"prefix":"10.1111","volume":"112","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-0983-8865","authenticated-orcid":false,"given":"L.","family":"De\u00a0Proost","sequence":"first","affiliation":[{"name":"Department of Obstetrics and Gynecology Erasmus Medical Center  Rotterdam The Netherlands"},{"name":"Department of Medical Ethics, Philosophy and History of Medicine Erasmus Medical Center  Rotterdam The Netherlands"},{"name":"Department of Neonatology Erasmus Medical Center  Rotterdam The Netherlands"},{"name":"Department of Obstetrics Leids University Medical Center  Leiden The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8281-5873","authenticated-orcid":false,"given":"A.","family":"de Boer","sequence":"additional","affiliation":[{"name":"Department of Obstetrics Leids University Medical Center  Leiden The Netherlands"},{"name":"Department of Neonatology, Amalia Children's Hospital, Radboud UMC Radboud Institute for Health Sciences  Nijmegen The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"I. K. M.","family":"Reiss","sequence":"additional","affiliation":[{"name":"Department of Neonatology Erasmus Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E. A. P.","family":"Steegers","sequence":"additional","affiliation":[{"name":"Department of Obstetrics and Gynecology Erasmus Medical Center  Rotterdam The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9555-6922","authenticated-orcid":false,"given":"A. A. 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