Context: As the European population ages and the number of cancer deaths annually increases, there is an urgent requirement to provide high-quality, effective care. The measurement of outcomes in advanced disease is complex, and to conduct comparative research and meta-analyses, appropriate tool selection is essential.
Objectives: This study aimed to identify the outcome tools currently in use in end-of-life care (both clinically and for research) across Europe and investigate the preferred features of outcome tools from the perspective of those who select and apply them.
Methods: A pan-European Internet-based survey of tool users was conducted in research and clinical populations. Respondents were asked to identify the tools they are using and describe ideal features of the measures. The study was conducted in accordance with guidance for best practice in web-based research.
Results: Of the 311 participants who completed a survey, 99 tools in clinical care and audit, and 94 in research, were cited by less than 10 participants. Further data revealed that respondents require the number of potential tools to be rationalized and that brief tools are favored.
Conclusion: The selection of valid and appropriate tools for palliative care populations requires expert guidance and support to ensure that clinicians and researchers are collecting data that have validity and potential for comparison within and between populations and countries.
Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.