Evidence map›Paper›PMID 35915561›Full record

ArticlePalliative medicine2022

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Catriona R Mayland, Katy A Sunderland, Matthew Cooper, Paul Taylor, Philip A Powell, Lucy Zeigler, Vicki Cox, Constance Gilman, Nicola Turner, Kate Flemming and 1 more

Open access · hybridAbstract readScoping Review
PubMed Full text at PMC Publisher
In one paragraph

Article in Palliative medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
4.2field-weighted citation impact, top 6% of its field
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

4 citing papers in PubMed, 11 citations in OpenAlex.

  1. Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2026
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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 at 5 institutions in 1 country.

Catriona R MaylandDepartment of Oncology and Metabolism, University of Sheffield, Sheffield, UK.ORCID 0000-0002-1440-9953
Katy A SunderlandThe Medical School, University of Sheffield, Sheffield, UK.
Matthew CooperSheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.ORCID 0000-0003-0073-260X
Paul TaylorSchool of Health and Related Research, University of Sheffield, Sheffield, UK.ORCID 0000-0001-9140-4972
Philip A PowellSchool of Health and Related Research, University of Sheffield, Sheffield, UK.
Lucy ZeiglerAcademic Unit of Palliative Care, School of Medicine, University of Leeds, Leeds, UK.ORCID 0000-0001-9563-5014
Vicki CoxSheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Constance GilmanSheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK.
Nicola TurnerDepartment of Oncology and Metabolism, University of Sheffield, Sheffield, UK.ORCID 0000-0002-0870-8324
Kate FlemmingDepartment of Health Sciences, The University of York, York, UK.ORCID 0000-0002-0795-8516
Lorna K FraserDepartment of Health Sciences, Martin House Research Centre, University of York, York, UK.ORCID 0000-0002-1360-4191
University of Sheffield · GBSheffield Teaching Hospitals NHS Foundation Trust · GBUniversity of York · GBUniversity of Leeds · GBUniversity of Liverpool · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundThe circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided.

aimTo identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools.

designScoping review was conducted following the Arksey and O'Malley methodological framework. DATA SOURCES: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000-June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the 'dying' phase of illness (defined as the last month of life).

resultsFrom 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as 'proxy' assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting.

conclusionsFuture research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.

Indexed as

Hospice CareTerminal CareAdolescentChildHumansPalliative CareQuality of LifeReproducibility of ResultsadolescentChildpalliative carequality of deathquality of dyingreviewterminal caretools

Identifiers

PMID35915561
PMCPMC9446433
OpenAlexW4289528173

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.