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Title: Meaning behind measurement : self-comparisons affect responses to health related quality of life questionnaires
Authors: Robertson, Clare
Langston, Anne L.
Stapley, Sally
McColl, Elaine
Campbell, Marion Kay
Fraser, William D.
MacLennan, Graeme Stewart
Selby, Peter L.
Ralston, Stuart H.
Fayers, Peter M.
PRISM Trial Group
University of Aberdeen, School of Medicine & Dentistry, Division of Applied Health Sciences
Keywords: Health-related quality of life
Paget’s disease
Elderly
Cognitive interviewing
Self-comparison
Issue Date: 2009
Publisher: Springer
Citation: Robertson, C., Langston, A.L., Stapley, S., McColl, E., Campbell, M.K., Fraser, W.D., MacLennan, G., Selby, P.L., Ralston, S.H., and Fayers, P., (2009) Meaning behind measurement : self-comparisons affect responses to health related quality of life questionnaires. Quality of Life Research, 18(2), pp.221-230.
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 selfcomparison reference frames is necessary for the interpretation of responses to questions about HRQOL.
URI: http://hdl.handle.net/2164/306
DOI: http://dx.doi.org/10.1007/s11136-008-9435-1
ISSN: 0962-9343
Rights: The original publication is available at www.springerlink.com
Appears in Collections:Applied Health Sciences research
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