Cumming School of Medicine, University of Calgary, 3330 Hospital Dr NW, Calgary AB T2N4N1, Canada.
University of Wisconsin School of Medicine and Public Health, 750 Highland Ave, Madison, WI 53726, USA.
Semin Arthritis Rheum. 2022 Aug;55:152029. doi: 10.1016/j.semarthrit.2022.152029. Epub 2022 May 19.
Existing patient-reported outcome measures (PROMs) in rheumatoid arthritis (RA) may be limited in their applicability to populations that are at risk for inequities. We conducted a systematic review to identify and rate evidence in the validation studies for PROMs in populations at risk for inequity.
A systematic review of MEDLINE and EMBASE was completed. The search strategy was developed to identify measurement property studies for PROMs of interest (selected pain, disease activity, global evaluation and quality of life scales) in patients with RA. We identified experimental, observational, and qualitative studies reporting analysis of feasibility, construct validity and discriminant ability metrics for populations at risk for inequity by various factors including race, ethnicity, culture or language; employment status; sex and gender identity; education level; socioeconomic status; social support; age; health literacy and disability. These were rated based on the OMERACT Summary of Measurement Properties Equity table.
From 19,786 titles and abstracts screened, we identified 14 unique studies reporting validation metrics for pain (n = 3), DAS28-ESR or DAS28-CRP (n = 2), ACR20 (n = 1), patient global assessment (n = 2), EQ5D (n = 4), and PROMIS® (n = 3) by race (n = 10 studies), age (n = 6 studies), sex (n = 5 studies), education level (n = 2 studies), and disability, literacy, employment status, social support level and socioeconomic status (n = 1 study each). Five studies reported on feasibility, 12 reported construct validity metrics, and 4 studies reported on discriminant validity metrics. All studies by culture or language were rated as having good measurement property metrics. There was limited assessment of measurement property metrics for other populations at risk for inequity.
Our study highlights important gaps in patient representation in rheumatology research for accepted outcome measures. New outcome measures being developed for research purposes and clinical practice should ensure and report representation of patients from populations at risk for inequities in the testing of metrics of feasibility, construct validity and discriminant ability metrics.
现有的类风湿关节炎（RA）患者报告结局（PROM）测量工具可能在适用于存在不平等风险的人群方面存在局限性。我们进行了一项系统评价，以确定和评估存在不平等风险人群的 PROM 验证研究中的证据。
我们对 MEDLINE 和 EMBASE 进行了系统评价。该搜索策略旨在确定 RA 患者感兴趣的 PROM（选定的疼痛、疾病活动、总体评估和生活质量量表）的测量特性研究。我们确定了通过各种因素（包括种族、民族、文化或语言；就业状况；性别认同；教育程度；社会经济地位；社会支持；年龄；健康素养和残疾）存在不平等风险的人群的可行性、结构有效性和判别能力指标的实验、观察和定性研究。这些研究基于 OMERACT 测量特性公平性总结表进行了评级。
在筛选了 19786 篇标题和摘要后，我们确定了 14 项独特的研究报告了疼痛（n=3）、DAS28-ESR 或 DAS28-CRP（n=2）、ACR20（n=1）、患者总体评估（n=2）、EQ5D（n=4）和 PROMIS®（n=3）的验证指标，这些研究分别涉及种族（n=10）、年龄（n=6）、性别（n=5）、教育程度（n=2）和残疾、文化程度、就业状况、社会支持水平和社会经济地位（n=1）。五项研究报告了可行性，十二项研究报告了结构有效性指标，四项研究报告了判别有效性指标。所有涉及文化或语言的研究都被评为具有良好的测量属性指标。其他存在不平等风险的人群的测量属性指标评估有限。
我们的研究强调了接受的结局测量工具在风湿病学研究中患者代表性的重要差距。为研究目的和临床实践开发的新结局测量工具应确保并报告在测试可行性、结构有效性和判别能力指标时，来自存在不平等风险人群的患者的代表性。
