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

Nikki McCaffrey; Pawel Skuza; Katrina Breaden; Simon Eckermann; Janet Hardy; Sheila Oaten; Michael Briffa; David Currow

doi:10.1371/journal.pone.0094316

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. 2014 Apr 15;9(4):e94316. doi: 10.1371/journal.pone.0094316. eCollection 2014.

Authors

Nikki McCaffrey¹, Pawel Skuza², Katrina Breaden³, Simon Eckermann⁴, Janet Hardy⁵, Sheila Oaten⁶, Michael Briffa⁷, David Currow³

Affiliations

¹ Flinders Centre for Clinical Change and Health Care Research, Flinders University, Daw Park, South Australia, Australia.
² 2eResearch@Flinders, Central Library, Flinders University, Bedford Park, South Australia, Australia.
³ Discipline of Palliative and Supportive Services, Flinders University, Daw Park, South Australia, Australia.
⁴ Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.
⁵ Department of Palliative and Supportive Care, Mater Health Services, Brisbane, Queensland, Australia.
⁶ Southern Adelaide Palliative Services, Repatriation General Hospital, Daw Park, South Australia, Australia.
⁷ Palliative Care Unit, Royal Adelaide Hospital, Adelaide, South Australia, Australia.

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.

Publication types

Research Support, Non-U.S. Gov't
Validation Study

MeSH terms

Aged
Aged, 80 and over
Feasibility Studies
Female
Humans
Male
Middle Aged
Palliative Care*
Patient Outcome Assessment*
Psychometrics
Quality of Life*
Self Report*

Grants and funding

This study was funded by the Australian Government’s Department of Health under the National Palliative Care Strategy. The funder had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.