The selection and use of outcome measures in palliative and end-of-life care research:the MORECare international consensus workshop

Evans, Catherine J. and Benalia, Hamid and Preston, Nancy J. and Grande, Gunn and Gysels, Marjolein and Short, Vicky and Daveson, Barbara A. and Bausewein, Claudia and Todd, Chris and Higginson, Irene J. and , MORECare (2013) The selection and use of outcome measures in palliative and end-of-life care research:the MORECare international consensus workshop. Journal of Pain and Symptom Management, 46 (6). pp. 925-937. ISSN 0885-3924

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Abstract

CONTEXT: A major barrier to widening and sustaining palliative care service provision is the requirement for better selection and use of outcome measures. Service commissioning is increasingly based on patient, carer, and service outcomes as opposed to service activity. OBJECTIVES: To generate recommendations and consensus for research in palliative and end-of-life care on the properties of the best outcome measures, enhancing the validity of proxy-reported data and optimal data collection time points. METHODS: An international expert "workshop" was convened and an online consensus survey was undertaken using the MORECare Transparent Expert Consultation to generate recommendations and level of agreement. We focused on three areas: 1) measurement properties, 2) use of proxies, and 3) measurement timing. Data analysis comprised descriptive analysis of aggregate scores and collation of narrative comments. RESULTS: There were 31 workshop attendees; 29 recommendations were included in the online survey, completed by 28 experts. The top three recommendations by area were the following: 1) the properties of the best outcome measures are responsive to change over time and capture clinically important data, 2) to enhance the validity of proxy data requires clear and specific guidelines to aid lay individuals' and/or professionals' completion of proxy measures, and 3) data collection time points need clear identification to establish a baseline. CONCLUSION: Outcome measurement in palliative and end-of-life care requires the use of psychometrically robust measures that are clinically responsive, with defined data collection time points to establish a baseline and clear administration guidelines to complete proxy measures. To further the field requires clinical imperatives to more closely inform recommendations on outcome measurement.

Item Type:
Journal Article
Journal or Publication Title:
Journal of Pain and Symptom Management
Additional Information:
Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Uncontrolled Keywords:
/dk/atira/pure/subjectarea/asjc/2900
Subjects:
ID Code:
65848
Deposited By:
Deposited On:
05 Aug 2013 09:56
Refereed?:
Yes
Published?:
Published
Last Modified:
13 May 2020 02:13