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Palliative medicine
Jan, 2016;30 (1): 23-44.

Psychometric properties of carer-reported outcome measures in palliative care: A systematic review.

Charlotte T J Michels, Mary Boulton, Astrid Adams, Bee Wee, Michele Peters
Author Information
  1. Charlotte T J Michels: Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Radboud University Nijmegen Medical Centre, Nijmegen, The Netherlands.
  2. Mary Boulton: Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK.
  3. Astrid Adams: Sir Michael Sobell House, Oxford University Hospitals NHS Trust, Oxford, UK.
  4. Bee Wee: Faculty of Health and Life Sciences, Oxford Brookes University, Oxford, UK Sir Michael Sobell House, Oxford University Hospitals NHS Trust, Oxford, UK Nuffield Department of Medicine, University of Oxford, Oxford, UK.
  5. Michele Peters: Health Services Research Unit, Nuffield Department of Population Health, University of Oxford, Oxford, UK Michele.Peters@dph.ox.ac.uk.
PMID: 26407683 DOI: 10.1177/0269216315601930

Abstract

BACKGROUND: Informal carers face many challenges in caring for patients with palliative care needs. Selecting suitable valid and reliable outcome measures to determine the impact of caring and carers' outcomes is a common problem.
AIM: To identify outcome measures used for informal carers looking after patients with palliative care needs, and to evaluate the measures' psychometric properties.
DESIGN: A systematic review was conducted. The studies identified were evaluated by independent reviewers (C.T.J.M., M.B., M.P.). Data regarding study characteristics and psychometric properties of the measures were extracted and evaluated. Good psychometric properties indicate a high-quality measure.
DATA SOURCES: The search was conducted, unrestricted to publication year, in the following electronic databases: Applied Social Sciences Index and Abstracts, Cumulative Index to Nursing and Allied Health Literature, The Cochrane Library, EMBASE, PubMed, PsycINFO, Social Sciences Citation Index and Sociological Abstracts.
RESULTS: Our systematic search revealed 4505 potential relevant studies, of which 112 studies met the inclusion criteria using 38 carer measures for informal carers of patients with palliative care needs. Psychometric properties were reported in only 46% (n = 52) of the studies, in relation to 24 measures. Where psychometric data were reported, the focus was mainly on internal consistency (n = 45, 87%), construct validity (n = 27, 52%) and/or reliability (n = 14, 27%). Of these, 24 measures, only four (17%) had been formally validated in informal carers in palliative care.
CONCLUSION: A broad range of outcome measures have been used for informal carers of patients with palliative care needs. Little formal psychometric testing has been undertaken. Furthermore, development and refinement of measures in this field is required.

Keywords

Palliative care carers outcome measures psychometrics systematic review

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MeSH Term

Humans
Outcome Assessment, Health Care
Palliative Care
Psychometrics
Surveys and Questionnaires
Journal Article Research Support, Non-U.S. Gov't Review Systematic Review
Article has an altmetric score of 15

Word Cloud

Created with Highcharts 10.0.0measurescarerspalliativecareoutcomepsychometricpropertiespatientsneedsinformalsystematicstudiesreviewMIndexcaringusedconductedevaluatedsearchSocialSciencesAbstractsPsychometricreported24BACKGROUND:InformalfacemanychallengesSelectingsuitablevalidreliabledetermineimpactcarers'outcomescommonproblemAIM:identifylookingevaluatemeasures'DESIGN:identifiedindependentreviewersCTJBPDataregardingstudycharacteristicsextractedGoodindicatehigh-qualitymeasureDATASOURCES:unrestrictedpublicationyearfollowingelectronicdatabases:AppliedCumulativeNursingAlliedHealthLiteratureCochraneLibraryEMBASEPubMedPsycINFOCitationSociologicalRESULTS:revealed4505potentialrelevant112metinclusioncriteriausing38carer46%n = 52relationdatafocusmainlyinternalconsistencyn = 4587%constructvalidityn = 2752%and/orreliabilityn = 1427%four17%formallyvalidatedCONCLUSION:broadrangeLittleformaltestingundertakenFurthermoredevelopmentrefinementfieldrequiredcarer-reportedcare:Palliativepsychometrics

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