eprintid: 10206671 rev_number: 12 eprint_status: archive userid: 699 dir: disk0/10/20/66/71 datestamp: 2025-03-28 12:44:28 lastmod: 2025-03-28 12:48:32 status_changed: 2025-03-28 12:44:28 type: article metadata_visibility: show sword_depositor: 699 creators_name: Gallagher, Katie creators_name: Chant, Kathy creators_name: Parisi, Veronica creators_name: Patel, Mehali creators_name: Dunbar, Helena creators_name: Paize, Fauzia creators_name: Bertaud, Sophie creators_name: Agyepong, Agnes creators_name: Mancini, Alexandra creators_name: Bluebond-Langner, Myra creators_name: Marlow, Neil title: Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: a systematic review ispublished: inpress divisions: UCL divisions: B02 divisions: D11 divisions: G14 note: Copyright © Author(s) (or their employer(s)) 2025. Re-use permitted under CC BY. Published by BMJ Group. https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/. abstract: Objectives: Standardised reporting of outcomes in neonatal palliative and/or end-of-life care would facilitate comparison of practice and lead to more informed decisions about practice. We systematically reviewed evidence evaluating outcomes currently used to characterise the clinical provision of palliative and/or end-of-life care in neonatal settings. // Methods: A systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines was undertaken using Ovid Medline, Ovid Embase, OVID PsycINFO, OVID MIDIRIS and EBSCOhost CINAHL. No date or language restrictions were used. Studies were included if they measured or reported outcomes related to the clinical practice of neonatal palliative care in a neonatal unit. // Results: Of 7998 records identified through database searching, 20 articles were included. Identified studies were retrospective chart reviews. No studies used standardised outcomes and all used proxy outcome measures. Results were organised according to the WHO domains of paediatric palliative care. All studies (n=20) reported documentation of physical symptoms and functional status (physical domain); six documented parental emotional and support needs (psychological domain); four reported sibling support and wider family presence (social and cultural domain), and three reported support from spiritual services (spiritual domain). // Conclusion: Despite neonatal death accounting for the largest category of child death under 5 years of age, there are no standardised outcomes from which to characterise or develop clinical practice. Developing a core outcome set for neonatal palliative and end-of-life care would ensure that services can be compared using reliably collected and collated data and help advance care in this area. date: 2025-01-31 date_type: published publisher: BMJ PUBLISHING GROUP official_url: https://doi.org/10.1136/archdischild-2024-328252 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2358173 doi: 10.1136/archdischild-2024-328252 medium: Print-Electronic pii: archdischild-2024-328252 lyricists_name: Marlow, Neil lyricists_name: Gallagher, Katie lyricists_name: Chant, Kathy lyricists_id: NMARL26 lyricists_id: KGALL18 lyricists_id: KCCHA67 actors_name: Gallagher, Katie actors_id: KGALL18 actors_role: owner funding_acknowledgements: NIHR302193 [National Institute for Health and Care Research ICA Clinical Lectureship award] full_text_status: public publication: Archives of Disease in Childhood: Fetal and Neonatal Edition pages: 6 event_location: England issn: 1359-2998 citation: Gallagher, Katie; Chant, Kathy; Parisi, Veronica; Patel, Mehali; Dunbar, Helena; Paize, Fauzia; Bertaud, Sophie; ... Marlow, Neil; + view all <#> Gallagher, Katie; Chant, Kathy; Parisi, Veronica; Patel, Mehali; Dunbar, Helena; Paize, Fauzia; Bertaud, Sophie; Agyepong, Agnes; Mancini, Alexandra; Bluebond-Langner, Myra; Marlow, Neil; - view fewer <#> (2025) Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: a systematic review. Archives of Disease in Childhood: Fetal and Neonatal Edition 10.1136/archdischild-2024-328252 <https://doi.org/10.1136/archdischild-2024-328252>. (In press). Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10206671/1/Gallagher_archdischild-2024-328252.full.pdf