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

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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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Abbreviations

HRQOL:

Health-related quality of life

SF-36:

Short Form 36

EQ-5D:

EuroQol 5 Dimensions

HAQ:

Health Assessment Questionnaire

PRISM trial:

Paget’s disease: a randomised trial of intensive versus symptomatic management

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Acknowledgements

The authors would like to thank all of the participants who agreed to be interviewed and our colleagues who transcribed the interviews and to acknowledge the Chief Scientist Office of the Scottish Government Health Directorates for funding this research, the PRISM funding bodies (the Arthritis Research Campaign, the National Association for the Relief of Paget’s disease and the Alliance for Better Bone Health) and all the investigators who worked on the PRISM trial. We hope that this article will provide Paget’s disease physicians with an insight into the meanings attached to quality of life for their patients.

Conflicts of interest

Anne L. Langston has received a travel bursary from the Alliance for Better Bone Health; William D. Fraser acts as a consultant for Procter & Gamble, MSD, Novartis, Sanofi Aventis, Nycomed and Roche; Peter L. Selby acts as a consultant for Procter & Gamble, Novartis, Nycomed and Roche; Stuart H. Ralston acts as a consultant for Procter & Gamble, Sanofi Aventis and Novartis.

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Authors and Affiliations

  1. Health Services Research Unit, University of Aberdeen, Aberdeen, AB25 22D, UK

    Clare Robertson, Anne L. Langston, Marion K. Campbell & Graeme MacLennan

  2. Tayside Clinical Trials Unit, University of Dundee, Dundee, DD1 9FY, UK

    Anne L. Langston

  3. Institute of Health and Society, Newcastle University, Newcastle upon Tyne, NE2 4AA, UK

    Sally Stapley & Elaine McColl

  4. Unit of Clinical Chemistry, School of Clinical Sciences, University of Liverpool, Liverpool, L69 3GA, UK

    William D. Fraser

  5. Department of Medicine, University of Manchester, Manchester, M13 9WL, UK

    Peter L. Selby

  6. Rheumatic Diseases Unit, University of Edinburgh, Edinburgh, EM4 2XU, UK

    Stuart H. Ralston

  7. Department of Public Health, University of Aberdeen, Aberdeen, UK

    Peter M. Fayers

  8. Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Pain and Palliation Research Group, Trondheim, Norway

    Peter M. Fayers

Authors
  1. Clare Robertson
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  2. Anne L. Langston
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  3. Sally Stapley
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  4. Elaine McColl
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  5. Marion K. Campbell
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  6. William D. Fraser
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  7. Graeme MacLennan
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  8. Peter L. Selby
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  9. Stuart H. Ralston
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  10. Peter M. Fayers
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Consortia

The PRISM Trial Group

Corresponding author

Correspondence to Clare Robertson.

Appendix

Appendix

Table 4 Example of the thematic arrangement of interview data by topic heading
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Robertson, C., Langston, A.L., Stapley, S. et al. Meaning behind measurement: self-comparisons affect responses to health-related quality of life questionnaires. Qual Life Res 18, 221–230 (2009). https://doi.org/10.1007/s11136-008-9435-1

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  • DOI: https://doi.org/10.1007/s11136-008-9435-1

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