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Type: Journal article
Title: Preliminary development and validation of a new endof-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life
Author: McCaffrey, N.
Skuza, P.
Breaden, K.
Eckermann, S.
Hardy, J.
Oaten, S.
Briffa, M.
Currow, D.
Citation: PLoS One, 2014; 9(4):e94316-1-e94316-10
Publisher: Public Library of Science
Issue Date: 2014
ISSN: 1932-6203
Editor: Macleod, U.
Statement of
Nikki McCaffrey, Pawel Skuza, Katrina Breaden, Simon Eckermann, Janet Hardy, Sheila Oaten, Michael Briffa, David Currow
Abstract: INTRODUCTION: The ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain. OBJECTIVE: This paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life. METHODS: Cognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness. RESULTS: Preliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, p<0.01, n = 137) and expected relationships between EOLPRO and proximity to death and constipation demonstrated construct validity. Pre- and post-treatment EOLPRO scores moderately agreed (n = 14, κ = 0.52 [95% CI 0.19, 0.84]) supporting reliability. The measure's apparent lack of sensitivity to discriminate between treatment responders and non-responders may be confounded. CONCLUSION: Based on the preliminary findings, the EOLPRO should be separated into 'personal' and 'financial' affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain.
Keywords: Humans
Palliative Care
Feasibility Studies
Quality of Life
Aged, 80 and over
Middle Aged
Self Report
Patient Outcome Assessment
Rights: © 2014 McCaffrey et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
DOI: 10.1371/journal.pone.0094316
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