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

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 .