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Meaning behind measurement: Self-comparisons affect responses to health-related quality of life questionnaires

Lookup NU author(s): Sally Stapley, Emerita Professor Elaine McCollORCiD

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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. © 2009 Springer Science+Business Media B.V.

Publication metadata

Author(s): Robertson C, Langston AL, Stapley S, McColl E, Campbell MK, Fraser WD, MacLennan G, Selby PL, Ralston SH, Fayers PM

Publication type: Article

Publication status: Published

Journal: Quality of Life Research

Year: 2009

Volume: 18

Issue: 2

Pages: 221-230

ISSN (print): 0962-9343

ISSN (electronic): 1573-2649

Publisher: Springer

URL: http://dx.doi.org/10.1007/s11136-008-9435-1

DOI: 10.1007/s11136-008-9435-1

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