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Preliminary development and validation of a new end-of-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life

McCaffrey, Nikki, Skuza, Pawel, Breaden, Katrina, Eckermann, Simon, Hardy, Janet, Oaten, Sheila, Briffa, Michael and Currow, David 2014, Preliminary development and validation of a new end-of-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life, PLoS one, vol. 9, no. 4, pp. 1-10, doi: 10.1371/journal.pone.0094316.

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Title Preliminary development and validation of a new end-of-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life
Author(s) McCaffrey, NikkiORCID iD for McCaffrey, Nikki orcid.org/0000-0003-3684-3723
Skuza, Pawel
Breaden, Katrina
Eckermann, Simon
Hardy, Janet
Oaten, Sheila
Briffa, Michael
Currow, David
Journal name PLoS one
Volume number 9
Issue number 4
Article ID e94316
Start page 1
End page 10
Total pages 10
Publisher PLoS
Place of publication San Francisco, Calif.
Publication date 2014
ISSN 1932-6203
Keyword(s) Aged
Aged, 80 and over
Feasibility Studies
Female
Humans
Male
Middle Aged
Palliative Care
Patient Outcome Assessment
Psychometrics
Quality of Life
Self Report
Summary 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.
Language eng
DOI 10.1371/journal.pone.0094316
Field of Research 111799 Public Health and Health Services not elsewhere classified
MD Multidisciplinary
Socio Economic Objective 0 Not Applicable
HERDC Research category C1.1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2014, The Authors
Free to Read? Yes
Use Rights Creative Commons Attribution licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30093387

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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.