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Roydhouse JK, Cohen ML, Eshoj HR, 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. 2021;doi: 10.1007/s11136-021-02937-8.
Roydhouse, J. K., Cohen, M. L., Eshoj, H. R., Corsini, N., Yucel, E., Rutherford, C., Wac, K., Berrocal, A., Lanzi, A., Nowinski, C., Roberts, N., Kassianos, A. P., Sebille, V., King, M. T., Mercieca-Bebber, R. (2021). The use of proxies and proxy-reported measures: a report of the international society for quality of life research (ISOQOL) proxy task force. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, . https://doi.org/10.1007/s11136-021-02937-8
Roydhouse, Jessica K, 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." Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation vol. (2021). doi: https://doi.org/10.1007/s11136-021-02937-8
Roydhouse JK, Cohen ML, Eshoj HR, Corsini N, Yucel E, Rutherford C, Wac K, Berrocal A, Lanzi A, Nowinski C, Roberts N, Kassianos AP, Sebille V, King MT, Mercieca-Bebber R. 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. 2021 Jul 12; doi: 10.1007/s11136-021-02937-8. Epub 2021 Jul 12. PMID: 34254262.
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Qual Life Res. 2021 Jul 12; doi: 10.1007/s11136-021-02937-8. Epub 2021 Jul 12.

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

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

Jessica K Roydhouse, Matthew L Cohen, Henrik R Eshoj, Nadia Corsini, Emre Yucel, Claudia Rutherford, Katarzyna Wac, Allan Berrocal, Alyssa Lanzi, Cindy Nowinski, Natasha Roberts, Angelos P Kassianos, Veronique Sebille, Madeleine T King, Rebecca Mercieca-Bebber,

Affiliations

  1. Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS, 7000, Australia. [email protected].
  2. Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, RI, USA. [email protected].
  3. Department of Communication Sciences and Disorders, University of Delaware, Newark, DE, USA.
  4. Department of Hematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.
  5. Rosemary Bryant AO Research Centre, University of South Australia, Adelaide, SA, Australia.
  6. Amgen, Global Health Economics, Thousand Oaks, CA, USA.
  7. Bristol Myers Squibb, New York, NY, USA.
  8. Cancer Nursing Research Unit (CNRU), Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
  9. School of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia.
  10. Quality of Life Technologies Lab, University of Geneva, Geneva, Switzerland.
  11. Quality of Life Technologies Lab, University of Copenhagen, Copenhagen, Denmark.
  12. Departments of Medical Social Sciences and Neurology, Northwestern University Feinberg School of Medicine, Evanston, IL, USA.
  13. Royal Brisbane and Women's Hospital, Brisbane, QLD, Australia.
  14. Queensland University of Technology, Brisbane, QLD, Australia.
  15. Department of Applied Health Research, University College London, London, UK.
  16. SPHERE, University of Nantes, University of Tours, INSERM, Nantes, France.
  17. Department of Methodology and Biostatistics, Nantes University Hospital, Nantes, France.
  18. Faculty of Medicine, Sydney Medical School, Central Clinical School, The University of Sydney, Sydney, NSW, Australia.
  19. NHMRC Clinical Trials Centre, The University of Sydney, Sydney, NSW, Australia.

PMID: 34254262 DOI: 10.1007/s11136-021-02937-8

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.

© 2021. The Author(s), under exclusive licence to Springer Nature Switzerland AG.

Keywords: Outcome measures; Proxy measures; Proxy-reported outcomes; Quality of life; Systematic review

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