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Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties

Kupeli, N; Candy, B; Tamura-Rose, G; Schofield, G; Webber, N; Hicks, SE; Floyd, T; ... Aspden, T; + view all (2018) Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties. Patient 10.1007/s40271-018-0328-2. (In press). Green open access

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Abstract

INTRODUCTION: Measuring the quality of care at the end of life and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the quality of care immediately prior to death; others retrospectively assess, following death, the quality of end-of-life care. The comparative evaluation of the properties and application of the various instruments has been limited. OBJECTIVE: This systematic review identified and critically appraised the psychometric properties and applicability of tools used after death. METHOD: We conducted a systematic review according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines by systematically searching MEDLINE, Embase, CINAHL, and PsycINFO for relevant studies. We then appraised the psychometric properties and the quality of reporting of the psychometric properties of the identified tools using the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) checklist. The protocol of this systematic review has been registered on PROSPERO (CRD42016047296). RESULTS: The search identified 4751 studies. Of these, 33 met the inclusion criteria, reporting on the psychometric properties of 67 tools. These tools measured quality of care at the end of life (n = 35), quality of dying and death (n = 22), or both quality of care at the end of life and dying and death (n = 10). Most tools were completed by family carers (n = 57), with some also completed by healthcare professionals (HCPs) (n = 2) or just HCPs (n = 8). No single tool was found to be adequate across all the psychometric properties assessed. Two quality of care at the end of life tools-Care of the Dying Evaluation and Satisfaction with Care at the End of Life in Dementia-had strong psychometric properties in most respects. Two tools assessing quality of dying and death-the Quality of Dying and Death and the newly developed Staff Perception of End of Life Experience-had limited to moderate evidence of good psychometric properties. Two tools assessing both quality of care and quality of dying and death-the Quality Of Dying in Long-Term Care for cognitively intact populations and Good Death Inventory (Korean version)-had the best psychometric properties. CONCLUSION: Four tools demonstrated some promise, but no single tool was consistent across all psychometric properties assessed. All tools identified would benefit from further psychometric testing.

Type: Article
Title: Tools Measuring Quality of Death, Dying, and Care, Completed after Death: Systematic Review of Psychometric Properties
Location: New Zealand
Open access status: An open access version is available from UCL Discovery
DOI: 10.1007/s40271-018-0328-2
Publisher version: https://doi.org/10.1007/s40271-018-0328-2
Language: English
Additional information: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 International License (http://creativecommons.org/licenses/by-nc/4.0/), which permits any noncommercial use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry
URI: https://discovery.ucl.ac.uk/id/eprint/10054960
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