Measuring Outcomes in Randomized Prospective Trials in Palliative Care

Richard A. Mularski*, Kenneth Rosenfeld, Stephen Joel Coons, Amylou Dueck, David Cella, David J. Feuer, Joseph Lipscomb, Martin S. Karpeh, Tom Mosich, Jeff A. Sloan, Robert S. Krouse

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

40 Scopus citations

Abstract

Palliative care aims to improve the quality of life of patients and their families and reduce suffering from life-threatening illness. In assessing palliative care efficacy, researchers must consider a broad range of potential outcomes, including those experienced by the patient's family/caregivers, clinicians, and the health care system. The purpose of this article is to summarize the discussions and recommendations of an Outcomes Working Group convened to advance the palliative care research agenda, particularly in the context of randomized controlled trials. These recommendations address the conceptualization of palliative care outcomes, sources of outcomes data, application of outcome measures in clinical trials, and the methodological challenges to outcome measurement in palliative care populations. As other fields have developed and refined methodological approaches that address their particular research needs, palliative care researchers must do the same to answer important clinical questions in rigorous and credible ways.

Original languageEnglish (US)
Pages (from-to)S7-S19
JournalJournal of Pain and Symptom Management
Volume34
Issue number1 SUPPL.
DOIs
StatePublished - Jul 2007

Keywords

  • Death
  • attitude to death
  • end-of-life care
  • family
  • health care
  • outcome assessment
  • proxy
  • quality indicators
  • quality of dying
  • quality of health care
  • terminal care

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

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