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Outcome measures for palliative care research

Agar, Meeraa,b,c; Luckett, Timb

Current Opinion in Supportive and Palliative Care: December 2012 - Volume 6 - Issue 4 - p 500–507
doi: 10.1097/SPC.0b013e32835a66ca
CHALLENGES IN CONDUCTING CLINICAL TRIALS IN SUPPORTIVE AND PALLIATIVE CARE: Edited by Amy P. Abernethy, Deborah W. Bruner and David C. Currow
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Purpose of review The aim of this review is to summarize the current state of the science in physical symptoms and other end-of-life care domains and/or illness-specific outcomes in palliative care. The review includes progress in outcome measure development and interpretation, with specific reference to the clinical trial context.

Recent findings There are validated measures in a wide range of domains, which can measure outcomes specific to palliative care interventions; which are sufficiently validated to ensure the results of the trial are robust and measuring differences which are both clinically meaningful. In several areas, consensus is emerging which will allow consolidation of outcome measurement and the ability to extend measurement from the clinical trial setting into routine clinical practice. Potential exists for composite measures covering areas prioritized by patients to improve comparability and efficiency. Adverse events need to be measured with the same degree of rigor as efficacy outcomes.

Summary Clinical trials of palliative care interventions need to consider a range of outcomes, however, the choice and timing of measurement of the primary outcome need to be guided by the domain most likely to be influenced by the intervention.

aDiscipline of Palliative and Supportive Services, Flinders University, Adelaide

bNew South Wales Palliative Care Clinical Trials Group (improving palliative care through clinical trials), South West Sydney Clinical School, University of New South Wales

cDepartment of Palliative Care, Braeside Hospital, Hammond Care, Sydney, New South Wales, Australia

Correspondence to Associate Professor Meera Agar, Department of Palliative Care, Braeside Hospital, Locked Bag 82, Wetherill Park, Sydney, NSW 2164, Australia. Tel: +61 2 9616 8649; fax: +61 8 9616 8657; e-mail: meera.agar@sswahs.nsw.gov.au

© 2012 Lippincott Williams & Wilkins, Inc.