Evidence map›Paper›PMID 39890444›Full record

SynthesisArchives of disease in childhood. Fetal and neonatal edition2025

Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: a systematic review.

Katie Gallagher, Kathy Chant, Veronica Parisi, Mehali Patel, Helena Dunbar, Fauzia Paize, Sophie Bertaud, Agnes Agyepong, Alexandra Mancini, Myra Bluebond-Langner and 1 more

Abstract readSystematic Review
In one paragraph

Synthesis in Archives of disease in childhood. Fetal and neonatal edition, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Katie GallagherUniversity College London, London, UK katie.gallagher@ucl.ac.uk.ORCID http://orcid.org/0000-0002-6847-9594
Kathy ChantUniversity College London, London, UK.
Veronica ParisiUniversity College London, London, UK.
Mehali PatelSands, London, UK.
Helena DunbarTogether for Short Lives, Bristol, UK.
Fauzia PaizeLiverpool Women's NHS Foundation Trust, Liverpool, UK.
Sophie BertaudUniversity of Oxford, Oxford, UK.ORCID http://orcid.org/0000-0002-9039-5207
Agnes AgyepongGlobal Black Maternal Health, London, UK.
Alexandra ManciniChelsea and Westminster Hospitals NHS Foundation Trust, London, UK.
Myra Bluebond-LangnerUniversity College London, London, UK.
Neil MarlowUniversity College London, London, UK.ORCID http://orcid.org/0000-0001-5890-2953

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesStandardised 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.

methodsA 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.

resultsOf 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).

conclusionDespite 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.

Indexed as

Outcome Assessment, Health CarePalliative CareTerminal CareHumansInfant, NewbornHealth services researchIntensive Care Units, NeonatalNeonatologyPalliative Care

Identifiers

PMID39890444
PMCPMC12418539

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.