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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

Author

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  • 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

Suggested Citation

  • Nikki McCaffrey & Pawel Skuza & Katrina Breaden & Simon Eckermann & Janet Hardy & Sheila Oaten & Michael Briffa & David Currow, 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, Public Library of Science, vol. 9(4), pages 1-10, April.
    • Handle: RePEc:plo:pone00:0094316
    DOI: 10.1371/journal.pone.0094316
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    References listed on IDEAS

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    1. Brazier, John & Ratcliffe, Julie & Salomon, Joshua & Tsuchiya, Aki, 2016. "Measuring and Valuing Health Benefits for Economic Evaluation," OUP Catalogue, Oxford University Press, edition 2, number 9780198725923.
    2. Guralnik, J.M. & LaCroix, A.Z. & Branch, L.G. & Kasl, S.V. & Wallace, R.B., 1991. "Morbidity and disability in older persons in the years prior to death," American Journal of Public Health, American Public Health Association, vol. 81(4), pages 443-447.
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