Outcome measures for palliative care research.
OBJECTIVE
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.


RESULTS
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.


CONCLUSIONS
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.
Discipline of Palliative and Supportive Services, Flinders University, Adelaide, Australia. meera.agar@sswahs.nsw.gov.au
Meera
M
Agar
Tim
T
Luckett
D002986:Clinical Trials as Topic / Q000379:methods*; D003704:Dementia / Q000628:therapy; D004417:Dyspnea / Q000517:prevention & control; D006801:Humans; D017063:Outcome Assessment, Health Care / Q000379:methods*; D059408:Pain Management; D010166:Palliative Care; D057240:Patient Preference; D011788:Quality of Life; D012107:Research Design; D057566:Self Report