Meaning behind measurement: self-comparisons affect responses to health-related quality of life questionnaires |
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Authors: | Clare Robertson Anne L. Langston Sally Stapley Elaine McColl Marion K. Campbell William D. Fraser Graeme MacLennan Peter L. Selby Stuart H. Ralston Peter M. Fayers |
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Affiliation: | 1. Health Services Research Unit, University of Aberdeen, Aberdeen, AB25 22D, UK 2. Tayside Clinical Trials Unit, University of Dundee, Dundee, DD1 9FY, UK 3. Institute of Health and Society, Newcastle University, Newcastle upon Tyne, NE2 4AA, UK 4. Unit of Clinical Chemistry, School of Clinical Sciences, University of Liverpool, Liverpool, L69 3GA, UK 5. Department of Medicine, University of Manchester, Manchester, M13 9WL, UK 6. Rheumatic Diseases Unit, University of Edinburgh, Edinburgh, EM4 2XU, UK 7. Department of Public Health, University of Aberdeen, Aberdeen, UK 8. Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Pain and Palliation Research Group, Trondheim, Norway
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Abstract: | Purpose The subjective nature of quality of life is particularly pertinent to the domain of health-related quality of life (HRQOL) research. The extent to which participants’ responses are affected by subjective information and personal reference frames is unknown. This study investigated how an elderly population living with a chronic metabolic bone disorder evaluated self-reported quality of life. Methods Participants (n = 1,331) in a multi-centre randomised controlled trial for the treatment of Paget’s disease completed annual HRQOL questionnaires, including the SF-36, EQ-5D and HAQ. Supplementary questions were added to reveal implicit reference frames used when making HRQOL evaluations. Twenty-one participants (11 male, 10 female, aged 59–91 years) were interviewed retrospectively about their responses to the supplementary questions, using cognitive interviewing techniques and semi-structured topic guides. Results The interviews revealed that participants used complex and interconnected reference frames to promote response shift when making quality of life evaluations. The choice of reference frame often reflected external factors unrelated to individual health. Many participants also stated that they were unclear whether to report general or disease-related HRQOL. Conclusions It is important, especially in clinical trials, to provide instructions clarifying whether ‘quality of life’ refers to disease-related HRQOL. Information on self-comparison reference frames is necessary for the interpretation of responses to questions about HRQOL. |
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Keywords: | Health-related quality of life Elderly Paget’ s disease Cognitive interviewing Self-comparison |
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