Proxy reporting in health: a scoping review of instructions, perspectives, and reporting experiences.

IF 2.7 3区医学 Q1 HEALTH CARE SCIENCES & SERVICES Quality of Life Research Pub Date : 2025-07-01 Epub Date: 2025-02-26 DOI:10.1007/s11136-025-03929-8

Henok Dagne, Kathleen Doherty, Julie Campbell, Alice Saul, Jessica Roydhouse

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Abstract

Background: Informal 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.

Methods: A 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.

Results: Of 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.

Conclusion: Proxies 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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卫生领域的代理报告：对指示、观点和报告经验的范围审查。

背景：非正式照料者（“代理人”）通常提供无偿照料并与照料对象有个人关系，经常被要求报告无法自我报告的个人的健康状况。然而，这项任务并非没有挑战。对于代理如何完成这项任务知之甚少，这对优化问卷设计提出了挑战。目的：本综述有三个目的：(1)确定提供给代理人的问卷视角指示，即在报告时，是否要求代理人从他们自己（代理人-代理人）或个人（代理人-患者）的角度回答问题；(2)确定代理人遵循了哪种视角指示，如果报告了，以及(3)如果有的话，获取了关于代理人报告他人经历的哪些信息。在代理-代理的观点中，代理从他们自己的角度进行报告，但是在代理-患者的观点中，他们从患有这种疾病的人的角度进行报告。方法：通过Medline、Psych Info、CINAHL和Embase进行系统检索。只有发表的文章符合为成年人提供代理报告的非正式照顾者的标准。结果：5816篇文献中，有60篇符合全文综述的条件，12篇纳入数据提取。指示各不相同，在8项研究中，代理被要求采用代理-代理和代理-患者两种观点，其中4项研究仅采用代理-患者观点。代理是否始终遵循所提供的指示尚不清楚。在纳入的研究中未报告代理报告经验。结论：为代理人提供不同角度的指示，但代理人对指示的依从性尚不清楚。此外，没有描述代理报告经验。提供明确的指示、评估代理人对指示的遵守情况以及收集代理人的报告经验，可以为最佳问卷设计提供信息，以帮助代理人更好地报告他人的健康状况。评审注册：注册于开放科学框架：https://osf.io/j4t87。

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来源期刊

Quality of Life Research 医学-公共卫生、环境卫生与职业卫生

CiteScore

6.50

自引率

8.60%

发文量

224

审稿时长

3-8 weeks

期刊介绍： Quality of Life Research is an international, multidisciplinary journal devoted to the rapid communication of original research, theoretical articles and methodological reports related to the field of quality of life, in all the health sciences. The journal also offers editorials, literature, book and software reviews, correspondence and abstracts of conferences. Quality of life has become a prominent issue in biometry, philosophy, social science, clinical medicine, health services and outcomes research. The journal''s scope reflects the wide application of quality of life assessment and research in the biological and social sciences. All original work is subject to peer review for originality, scientific quality and relevance to a broad readership. This is an official journal of the International Society of Quality of Life Research.