How is quality of life defined and assessed in published research?

Daniel S J Costa^{1

2

3}, Rebecca Mercieca-Bebber^{4

5

6}, Claudia Rutherford^{4

7}, Margaret-Ann Tait⁴, Madeleine T King⁴

Affiliations

¹ Pain Management Research Institute, Royal North Shore Hospital, Reserve Road, St Leonards, NSW, 2065, Australia. daniel.costa@sydney.edu.au.
² Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia. daniel.costa@sydney.edu.au.
³ Sydney Medical School, University of Sydney, Sydney, NSW, Australia. daniel.costa@sydney.edu.au.
⁴ Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia.
⁵ Sydney Medical School, University of Sydney, Sydney, NSW, Australia.
⁶ NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.
⁷ Sydney Nursing School, Cancer Nursing Research Unit (CNRU), University of Sydney, Sydney, NSW, Australia.

PMID: 33792834
DOI: 10.1007/s11136-021-02826-0

Review

How is quality of life defined and assessed in published research?

Daniel S J Costa et al. Qual Life Res. 2021 Aug.

. 2021 Aug;30(8):2109-2121.

doi: 10.1007/s11136-021-02826-0. Epub 2021 Apr 1.

Authors

Daniel S J Costa^{1

2

3}, Rebecca Mercieca-Bebber^{4

5

6}, Claudia Rutherford^{4

7}, Margaret-Ann Tait⁴, Madeleine T King⁴

Affiliations

¹ Pain Management Research Institute, Royal North Shore Hospital, Reserve Road, St Leonards, NSW, 2065, Australia. daniel.costa@sydney.edu.au.
² Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia. daniel.costa@sydney.edu.au.
³ Sydney Medical School, University of Sydney, Sydney, NSW, Australia. daniel.costa@sydney.edu.au.
⁴ Faculty of Science, School of Psychology, University of Sydney, Sydney, NSW, Australia.
⁵ Sydney Medical School, University of Sydney, Sydney, NSW, Australia.
⁶ NHMRC Clinical Trials Centre, University of Sydney, Sydney, NSW, Australia.
⁷ Sydney Nursing School, Cancer Nursing Research Unit (CNRU), University of Sydney, Sydney, NSW, Australia.

PMID: 33792834
DOI: 10.1007/s11136-021-02826-0

Abstract

Purpose: To ensure clarity in communication in the field of quality of life research, and meaningful use of 'quality of life' as a research outcome, requires two things: awareness that there is a range of conceptualisations and definitions of 'quality of life', and for any particular study, consistency between the way the term is defined and operationalised in that setting. We aimed to identify how frequently research articles described (HR)QOL as a construct of interest, how frequently they referred to "patient-reported outcome (measures)", which patient-reported outcome measures were used, and how (HR)QOL was defined.

Methods: We reviewed all Quality of Life Research articles published in 2017 and recorded whether they described health-related quality of life or quality of life as constructs of interest, and/or mentioned the term(s) patient-reported outcome (measures). We recorded definitions of (HR)QOL stated and questionnaires used. We classified articles according to constructs assessed and instruments used, and examined whether articles citing the same definition used the same questionnaires.

Results: We reviewed 300 articles; 65% stated that (HR)QOL was a construct of interest, 27% mentioned patient-reported outcome (measures), and 20% mentioned neither. Fifty-one articles provided definitions of (HR)QOL, citing 66 sources, with 11 definitions cited more than once. PROMIS, SF, EQ-5D, and EORTC instruments were the most commonly used. The only definition and questionnaire consistently used together were the WHO definitions/instruments.

Conclusion: These results demonstrate considerable heterogeneity in the definition and operationalisation of (HR)QOL, between and within studies. This limits meaningful interpretation of (HR)QOL scores and complicates literature searches. Investigators should define constructs and select instruments aligned with their definitions.

Keywords: Definition; Health-related quality of life; Patient-reported outcome measures; Patient-reported outcomes; Quality of life; Terminology.

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References

1. Ferrans, C. E. (2005). Definitions and conceptual models of quality of life. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes Research in Cancer: Measures, Methods and Applications. (pp. 14–30). Cambridge: Cambridge University Press.
1. Costa, D. S. J. (2015). Reflective, causal, and composite indicators of quality of life: A conceptual or an empirical distinction? Quality of Life Research, 24(9), 2057–2065. - DOI
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1. Aaronson, N. K., Ahmedzai, S., Bergman, B., Bullinger, M., Cull, A., Duez, N. J., et al. (1993). The european organisation for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute, 85(5), 365–376. - DOI

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How is quality of life defined and assessed in published research?

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How is quality of life defined and assessed in published research?

Authors

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Abstract

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