TY  - INPR
A1  - Gallagher, Katie
A1  - Chant, Kathy
A1  - Parisi, Veronica
A1  - Patel, Mehali
A1  - Dunbar, Helena
A1  - Paize, Fauzia
A1  - Bertaud, Sophie
A1  - Agyepong, Agnes
A1  - Mancini, Alexandra
A1  - Bluebond-Langner, Myra
A1  - Marlow, Neil
JF  - Archives of Disease in Childhood: Fetal and Neonatal Edition
UR  - https://doi.org/10.1136/archdischild-2024-328252
PB  - BMJ PUBLISHING GROUP
SN  - 1359-2998
N2  - 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.
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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.
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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).
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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.
ID  - discovery10206671
N1  - 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/.
AV  - public
Y1  - 2025/01/31/
EP  - 6
TI  - Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: a systematic review
ER  -