Evidence map›Paper›PMID 34254262›Full record

SynthesisQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2022

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

Jessica K Roydhouse, Matthew L Cohen, Henrik R Eshoj, Nadia Corsini, Emre Yucel, Claudia Rutherford, Katarzyna Wac, Allan Berrocal, Alyssa Lanzi, Cindy Nowinski and 6 more

Abstract readSystematic Review
PubMed Publisher
In one paragraph

Synthesis in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
24citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

24 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Proxy- and Patient-Reported Outcome Measures in Cleft Lip and/or Palate Under 8 Years of Age: A Scoping Review.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026
    Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Observational
  11. Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
    Article
  12. Feasibility of implementing a codesigned patient reported outcome measures (PROMs) collection system for older adults in acute and sub-acute hospital settings.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025
    Article
  13. Article
  14. Review
  15. Observational
  16. Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2024
    Article
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  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

16 authors.

Jessica K RoydhouseMenzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS, 7000, Australia. jessica.roydhouse@utas.edu.au.ORCID http://orcid.org/0000-0002-8025-5841
Matthew L CohenDepartment of Communication Sciences and Disorders, University of Delaware, Newark, DE, USA.
Henrik R EshojDepartment of Hematology, Quality of Life Research Center, Odense University Hospital, Odense, Denmark.
Nadia CorsiniRosemary Bryant AO Research Centre, University of South Australia, Adelaide, SA, Australia.
Emre YucelAmgen, Global Health Economics, Thousand Oaks, CA, USA.
Claudia RutherfordCancer Nursing Research Unit (CNRU), Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.
Katarzyna WacQuality of Life Technologies Lab, University of Geneva, Geneva, Switzerland.
Allan BerrocalQuality of Life Technologies Lab, University of Geneva, Geneva, Switzerland.
Alyssa LanziDepartment of Communication Sciences and Disorders, University of Delaware, Newark, DE, USA.
Cindy NowinskiDepartments of Medical Social Sciences and Neurology, Northwestern University Feinberg School of Medicine, Evanston, IL, USA.
Natasha RobertsRoyal Brisbane and Women's Hospital, Brisbane, QLD, Australia.
Angelos P KassianosDepartment of Applied Health Research, University College London, London, UK.
Veronique SebilleSPHERE, University of Nantes, University of Tours, INSERM, Nantes, France.
Madeleine T KingSchool of Psychology, Faculty of Science, The University of Sydney, Sydney, NSW, Australia.
Rebecca Mercieca-BebberFaculty of Medicine, Sydney Medical School, Central Clinical School, The University of Sydney, Sydney, NSW, Australia.
ISOQOL Proxy Task Force and the ISOQOL Board of Directors

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

aimsProxy 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.

methodsWe 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.

resultsThe 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.

Indexed as

ProxyQuality of LifeAdultHumansOutcome measuresProxy measuresProxy-reported outcomesQuality of lifeSystematic review

Identifiers

PMID34254262

What OpenQuestion holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.