Menzies Institute for Medical Research, University of Tasmania, 17 Liverpool Street, Hobart, TAS, 7000, Australia.
Department of Health Services, Policy & Practice, Brown University School of Public Health, Providence, RI, USA.
Qual Life Res. 2022 Feb;31(2):317-327. doi: 10.1007/s11136-021-02937-8. Epub 2021 Jul 12.
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.
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.
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.
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.
PROSPERO No. CRD42018103179.
当患者无法自我报告时，通常会使用代理报告。目前尚不清楚代理措施在成人保健和研究环境中是如何使用的。我们旨在描述这些环境中代理报告的使用情况，包括在成人健康人群中专门为代理报告开发的措施的使用情况。
我们系统地检索了 Medline、PsycINFO、PsycTESTS、CINAHL 和 EMBASE 从数据库建立到 2018 年 2 月的内容。搜索术语包括生活质量和健康结果、代理报告者以及健康状况术语的组合。提取的数据包括临床背景、使用的代理措施名称和其他描述性数据。我们确定这些措施是专门为代理使用而开发的，还是为代理使用而改编的现有措施。
数据库搜索确定了 17677 篇可能的文章，其中 14098 篇摘要进行了审查。其中，11098 篇被排除在外，2335 篇文章进行了全文审查，其中 880 篇文章进行了数据提取。最常见的临床环境是痴呆症（30%）、老年病学（15%）和癌症（13%）。大多数文章（51%）是配对研究，同一人在同一措施上同时有代理和患者的回答。大多数配对研究（77%）是一致性研究，比较这些措施上患者和代理的回答。
大多数使用代理的已发表研究都集中在代理-患者一致性上。在研究中使用的相对较少的代理措施是专门为代理使用而开发的。未来需要研究专门为代理开发的措施的性能。
PROSPERO 编号 CRD42018103179。
