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. 2013 Dec;46(6):925-37.
doi: 10.1016/j.jpainsymman.2013.01.010. Epub 2013 Apr 28.

The selection and use of outcome measures in palliative and end-of-life care research: the MORECare International Consensus Workshop

Catherine J Evans  1 , Hamid Benalia, Nancy J Preston, Gunn Grande, Marjolein Gysels, Vicky Short, Barbara A Daveson, Claudia Bausewein, Chris Todd, Irene J Higginson; MORECare
Collaborators, Affiliations

The selection and use of outcome measures in palliative and end-of-life care research: the MORECare International Consensus Workshop

Catherine J Evans et al. J Pain Symptom Manage. 2013 Dec.

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.

Keywords: Outcome assessment; consensus; evaluation studies; palliative care; research design.

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Figures

Fig. 1
Fig. 1
Flow diagram of the study design.
Fig. 2
Fig. 2
Properties of the best primary outcome measures in evaluations of palliative and EOL care. Box and whisker plot of the interquartile ranges and medians of level of agreement for the 11 recommendations (box: 25th and 75th percentiles; whiskers: minimum and maximum).
Fig. 3
Fig. 3
Enhancing the validity of proxy data in evaluations of palliative and EOL care. Box and whisker plot of the interquartile ranges and medians of level of agreement for the nine measurement recommendations (box: 25th and 75th percentiles; whiskers: minimum and maximum).
Fig. 4
Fig. 4
Data collection time points in evaluations of palliative and EOL care. Box and whisker plot of the interquartile ranges and medians of level of agreement for the nine recommendations (box: 25th and 75th percentiles; whiskers: minimum and maximum).
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