Evidence map›Paper›PMID 31185812›Full record

ArticlePalliative medicine2019

Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique.

Susanne de Wolf-Linder, Marsha Dawkins, Francesca Wicks, Sophie Pask, Kathy Eagar, Catherine J Evans, Irene J Higginson, Fliss E M Murtagh

Abstract readConsensus Statement
PubMed Full text at PMC Publisher
In one paragraph

Article in Palliative medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
28citing papers in PubMed, 2 pooled it
–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

28 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  9. Palliative care: what's the evidence?Clinical medicine (London, England) · 2025
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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

8 authors.

Susanne de Wolf-Linder1 School of Health Professions, Institute of Nursing, Zurich University of Applied Sciences, Winterthur, Switzerland.ORCID 0000-0003-3421-2418
Marsha Dawkins2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Francesca Wicks3 Cambridge Institute for Medical Research, University of Cambridge, Cambridge, UK.
Sophie Pask4 Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK.
Kathy Eagar5 Australian Health Services Research Institute, University of Wollongong, Wollongong, NSW, Australia.
Catherine J Evans2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Irene J Higginson2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.
Fliss E M Murtagh2 Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, UK.ORCID 0000-0003-1289-3726

Funding

Department of Health RP-PG-1210-12015
6 · The paper itself

Abstract

backgroundWhen capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden.

aimTo determine which domains of palliative care are most important for measurement of outcomes, and the optimal time period over which these should be measured.

designAn international expert consensus workshop using nominal group technique. Data were analysed descriptively, and weighted according to ranking (1-5, lowest to highest priority) of domains. Participants' rationales for their choices were analysed thematically. SETTING/

participantsIn all, 33 clinicians and researchers working globally in palliative care outcome measurement participated. Two groups (n = 16; n = 17) answered one question each (either on domains or optimal timing). This workshop was conducted at the 9th World Research Congress of the European Association for Palliative Care in 2016.

resultsParticipants' years of experience in palliative care and in outcome measurement ranged from 10.9 to 14.7 years and 5.8 to 6.4 years, respectively. The mean scores (weighted by rank) for the top-ranked domains were 'overall wellbeing/quality of life' (2.75), 'pain' (2.06), and 'information needs/preferences' (2.06), respectively. The palliative measure 'Phase of Illness' was recommended as the preferred measure of time period over which the domains were measured.

conclusionThe domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' are recommended for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.

Indexed as

ConsensusOutcome Assessment, Health CarePalliative CareAdolescentAdultChildChild, PreschoolFemaleHumansInfantInternationalityMalePatient Reported Outcome MeasuresQuality Indicators, Health CareQuality of Health CareYoung AdultconsensusPalliative carepatient outcome assessmentpatient reported outcome measuresquality indicators

Identifiers

PMID31185812
PMCPMC6691595

What OpenQuestion holds

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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.