Evaluation of quality-of-life measures for use in palliative care: a systematic review

Author:

Albers Gwenda1,Echteld Michael A2,de Vet Henrica CW3,Onwuteaka-Philipsen Bregje D2,van der Linden Mecheline HM4,Deliens Luc5

Affiliation:

1. Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands, Palliative Care Centre of Expertise, VU University Medical Center, Amsterdam, The Netherlands,

2. Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands, Palliative Care Centre of Expertise, VU University Medical Center, Amsterdam, The Netherlands

3. Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

4. Department of Medical Psychology and Department of Medical Oncology, VU University Medical Center, Amsterdam, The Netherlands, Palliative Care Centre of Expertise, VU University Medical Center, Amsterdam, The Netherlands

5. Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands, Palliative Care Centre of Expertise, VU University Medical Center, Amsterdam, The Netherlands, End-of-Life Care Research Group, Vrije Universiteit Brussel, Brussels, Belgium

Abstract

Purpose: In this literature review we evaluated the feasibility and clinimetric quality of quality-of-life (QoL) measurement instruments suitable for use in palliative care. Methods: We conducted a systematic literature review to identify instruments measuring (at least one domain of) QoL. We selected articles that present data on patients receiving palliative care and at least one measurement property. A checklist was used to describe the characteristics of the instruments, and a widely accepted rating list was used to evaluate the clinimetric aspects. Results: 29 instruments were identified and evaluated, most of which were targeted at palliative patients in general. None of the instruments demonstrated satisfactory results for all measurement properties. Fourteen instruments received positive ratings for construct validity. Thirteen instruments were tested for reliability, but only two were tested adequately and had positive results (ICC>0.70). Responsiveness was not tested adequately for any of the instruments. Very few of the studies provided information on the interpretation of the scores. Overall, the MQOL, followed by the QUAL-E and the QODD, received the best ratings for their measurement properties. Conclusions: Many measurement instruments were identified, but most had not yet been adequately evaluated. The evaluation of existing instruments with good content validity should have priority over the development of new instruments.

Publisher

SAGE Publications

Subject

Anesthesiology and Pain Medicine,General Medicine

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