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The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force

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Abstract

Aims

Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations.

Methods

We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use.

Results

The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures.

Discussion

Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies.

Systematic review registration

PROSPERO No. CRD42018103179

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Data availability

Details of the included studies can be found on Figshare: https://doi.org/10.6084/m9.figshare.14888907.

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Author information

Author notes

  1. Emre Yucel

    Present address: Bristol Myers Squibb, New York, NY, USA

Authors and Affiliations

  1. Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS, 7000, Australia

    Jessica K. Roydhouse

  2. Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, RI, USA

    Jessica K. Roydhouse

  3. Department of Communication Sciences and Disorders, University of Delaware, Newark, DE, USA

    Matthew L. Cohen & Alyssa Lanzi

  4. Department of Hematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark

    Henrik R. Eshoj

  5. Rosemary Bryant AO Research Centre, University of South Australia, Adelaide, SA, Australia

    Nadia Corsini

  6. Amgen, Global Health Economics, Thousand Oaks, CA, USA

    Emre Yucel

  7. Cancer Nursing Research Unit (CNRU), Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia

    Claudia Rutherford

  8. School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia

    Claudia Rutherford & Madeleine T. King

  9. Quality of Life Technologies Lab, University of Geneva, Geneva, Switzerland

    Katarzyna Wac & Allan Berrocal

  10. Quality of Life Technologies Lab, University of Copenhagen, Copenhagen, Denmark

    Katarzyna Wac

  11. Departments of Medical Social Sciences and Neurology, Northwestern University Feinberg School of Medicine, Evanston, IL, USA

    Cindy Nowinski

  12. Royal Brisbane and Women’s Hospital, Brisbane, QLD, Australia

    Natasha Roberts

  13. Queensland University of Technology, Brisbane, QLD, Australia

    Natasha Roberts

  14. Department of Applied Health Research, University College London, London, UK

    Angelos P. Kassianos

  15. SPHERE, University of Nantes, University of Tours, INSERM, Nantes, France

    Veronique Sebille

  16. Department of Methodology and Biostatistics, Nantes University Hospital, Nantes, France

    Veronique Sebille

  17. Faculty of Medicine, Sydney Medical School, Central Clinical School, The University of Sydney, Sydney, NSW, Australia

    Rebecca Mercieca-Bebber

  18. NHMRC Clinical Trials Centre, The University of Sydney, Sydney, NSW, Australia

    Rebecca Mercieca-Bebber

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  1. Jessica K. Roydhouse
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  2. Matthew L. Cohen
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  3. Henrik R. Eshoj
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  15. Rebecca Mercieca-Bebber
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Consortia

the ISOQOL Proxy Task Force and the ISOQOL Board of Directors

Corresponding author

Correspondence to Jessica K. Roydhouse.

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The authors declare that they have no conflict of interest.

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The present institution is Bristol Myers Squibb, however this work was conducted while based at Amgen.

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Roydhouse, J.K., Cohen, M.L., Eshoj, H.R. et al. The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force. Qual Life Res 31, 317–327 (2022). https://doi.org/10.1007/s11136-021-02937-8

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