ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2025
Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
What it found
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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.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Preference-based measures in people with dementia: a systematic review of psychometric properties.Health and quality of life outcomes · 2026Pooled it
- Informal carers' perception on perspective taking when reporting as proxies about someone else's health.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- A Baseline Quantitative Analysis of Technology-Facilitated Gender-Based Violence Against Women with Disabilities in South Africa.Behavioral sciences (Basel, Switzerland) · 2026Article
- Carers' interpretation of the recall period and perspective-taking when completing the EQ health and wellbeing instrument (EQ-HWB)-9 as proxies for people with dementia: a think-aloud study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Aligning Biomedical Research With Neurodiversity to Support the Metabolic Health of Autistic Individuals.Obesity science & practice · 2026Article
- Examining the face validity of the EQ-HWB-9 in dementia: caregiver interpretation across "Today" and "7-Day" recall periods.Health and quality of life outcomes · 2026Article
- Unraveling honest responding: a systematic review on the effectiveness of social desirability bias reduction methods in survey research.Quality & quantity · 2026Article
- Validation of the Quick Dementia Rating System (QDRS): diagnostic properties and cutoff values.Dementia & neuropsychologia · 2026Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInformal carers ('proxies'), who typically provide unpaid care and have a personal relationship with the care recipient, are often asked to report on the health of individuals who are unable to self-report. However, this task is not without its challenges. Little is known about how proxies approach this task, which poses challenges for optimal questionnaire design. PURPOSE: The review had three aims: (1) to identify the questionnaire perspective instructions provided to proxies i.e., whether the proxy was asked to answer from their own (proxy-proxy) or the person's (proxy-patient) perspective when reporting, (2) identify which perspective instruction the proxies followed, if reported, and (3) what information, if any, was captured about the proxy's experience of reporting about someone else. In the proxy-proxy perspective, proxies report from their own perspective, but in the proxy-patient perspective they report from the perspective of the person living with the condition.
methodsA systematic search was conducted across Medline, Psych Info, CINAHL, and Embase. Only published articles meeting the criteria of informal carers providing proxy reports for adults were considered.
resultsOf 5816 publications, 60 articles were eligible for full-text review, and 12 were included for data extraction. Instructions varied, with proxies asked to adopt both proxy-proxy and proxy-patient perspectives in eight studies and only the proxy-patient in four of them. Whether proxies followed the provided instructions consistently is not known. Proxies' reporting experiences were not reported in the included studies.
conclusionProxies are provided with different perspective instructions, but proxy adherence to instructions is not known. Additionally, proxy reporting experience was not described. Providing clear instructions, evaulating proxy adherence to instructions and collecting proxies' reporting experiences can inform optimal questionnaire design to help proxies better report about the health of others. REVIEW REGISTRATION: Registered at open science framework: https://osf.io/j4t87 .
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