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

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, PRISM Trial Group

Research output: Contribution to journalArticle

13 Citations (Scopus)

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.
Original languageEnglish
Pages (from-to)221-230
Number of pages10
JournalQuality of Life Research
Volume18
Issue number2
Early online date14 Jan 2009
DOIs
Publication statusPublished - Mar 2009

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Quality of Life
ametantrone
Surveys and Questionnaires
Randomized Controlled Trials
Clinical Trials
Interviews
Bone and Bones
Health
Research
Population

Keywords

  • aged
  • aged, 80 and over
  • diphosphonates
  • female
  • Great Britain
  • health status
  • humans
  • male
  • middle aged
  • osteitis deformans
  • quality of life
  • questionnaires

Cite this

Meaning behind measurement : self-comparisons affect responses to health-related quality of life questionnaires. / Robertson, Clare; Langston, Anne L; Stapley, Sally; McColl, Elaine; Campbell, Marion K; Fraser, William D; MacLennan, Graeme; Selby, Peter L; Ralston, Stuart H; Fayers, Peter M; PRISM Trial Group.

In: Quality of Life Research, Vol. 18, No. 2, 03.2009, p. 221-230.

Research output: Contribution to journalArticle

Robertson, C, Langston, AL, Stapley, S, McColl, E, Campbell, MK, Fraser, WD, MacLennan, G, Selby, PL, Ralston, SH, Fayers, PM & PRISM Trial Group 2009, 'Meaning behind measurement: self-comparisons affect responses to health-related quality of life questionnaires', Quality of Life Research, vol. 18, no. 2, pp. 221-230. https://doi.org/10.1007/s11136-008-9435-1
Robertson, Clare ; Langston, Anne L ; Stapley, Sally ; McColl, Elaine ; Campbell, Marion K ; Fraser, William D ; MacLennan, Graeme ; Selby, Peter L ; Ralston, Stuart H ; Fayers, Peter M ; PRISM Trial Group. / Meaning behind measurement : self-comparisons affect responses to health-related quality of life questionnaires. In: Quality of Life Research. 2009 ; Vol. 18, No. 2. pp. 221-230.
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AB - 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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