Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, PO Box 616, 6200 MD Maastricht, The Netherlands.
Department of Health Services Research, Maastricht University, PO Box 616, 6200 MD Maastricht, The Netherlands.
Semin Arthritis Rheum. 2018 Dec;48(3):357-366. doi: 10.1016/j.semarthrit.2018.03.006. Epub 2018 Mar 15.
This study systematically reviewed commonly used patient-reported outcome measures (PROMs) for rheumatoid arthritis (RA), routinely collected in clinical practice, and evaluated objectives of their use. An additional survey conducted among identified RA registries provided additional information about collection of PROMs. Medline Ovid and Embase were searched for observational studies using data of RA registries/cohorts, published between 2011 and 2016. The search combined a validated search algorithm for PROMs and RA. Study characteristics, objective, registry, country, type of PROMs collected, and time interval of collection were systematically recorded. The survey asked about PROMs collected by the registries, timing, response rates, and barriers to collection. Ninety-eight articles from 15 countries were identified making use of 37 registries and large cohorts. Thirty-three PROMs were collected routinely, with VAS, EQ-5d and HAQ being the most used tools. Health domains reported the most were functional assessment, pain and patient global assessment. Despite the wide variety of collected PROMs, foci of the articles were similar and reported results narrow. This review suggests rethinking the role of PROMs in rheumatology research to use this information as broadly as possible, including evaluation of treatments, economic analyses, and decision-making based on patients' experiences at system, provider, and physician level.
本研究系统地回顾了类风湿关节炎（RA）临床实践中常用的、常规收集的患者报告结局测量（PROMs），并评估了其使用目的。在确定的 RA 登记处中进行的额外调查提供了关于 PROMs 收集的更多信息。在 2011 年至 2016 年期间，使用 RA 登记处/队列的数据，在 Medline Ovid 和 Embase 上搜索观察性研究。该搜索结合了用于 PROMs 和 RA 的验证搜索算法。系统地记录了研究特征、目的、登记处、国家、收集的 PROM 类型以及收集的时间间隔。该调查询问了登记处收集的 PROMs、时间安排、应答率以及收集障碍。来自 15 个国家的 98 篇文章利用 37 个登记处和大型队列进行了研究。33 种 PROMs 被常规收集，VAS、EQ-5d 和 HAQ 是最常用的工具。报告的健康领域主要是功能评估、疼痛和患者整体评估。尽管收集的 PROMs 种类繁多，但文章的重点相似，报告的结果也很有限。本综述建议重新思考 PROMs 在风湿病学研究中的作用，以便尽可能广泛地利用这些信息，包括对治疗的评估、经济分析以及基于患者在系统、提供者和医生层面的经验做出决策。
