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系统范围审查映射二十年多发性硬化症康复试验:呼吁在康复研究中推进种族和民族研究

Mapping two decades of multiple sclerosis rehabilitation trials: A systematic scoping review and call to action to advance the study of race and ethnicity in rehabilitation research.

机构信息

School of Rehabilitation Therapy, Queen's University, Louise D. Acton Building, 31 George Street, Kingston K7L 3N6, Canada.

School of Rehabilitation Therapy, Queen's University, Louise D. Acton Building, 31 George Street, Kingston K7L 3N6, Canada; Research Department, Humber River Hospital, Toronto, Canada; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada.

出版信息

Mult Scler Relat Disord. 2023 Apr;72:104606. doi: 10.1016/j.msard.2023.104606. Epub 2023 Mar 5.

Abstract

BACKGROUND

Multiple sclerosis (MS), is prevalent across many racial and ethnic groups, and disproportionately impacts racially minoritized populations. Rehabilitation interventions are an important component of comprehensive MS care. Yet, we do not know the extent to which MS rehabilitation trials consider race and ethnicity in defining eligibility criteria, planning recruitment strategies, selecting outcome measures, supporting intervention delivery, and designing approaches to promote adherence and retention.

METHODS

We conducted a scoping review of five databases (MEDLINE, CINAHL, Cochrane Central, EMBASE, and Web of Science) to locate randomized controlled rehabilitation trials published from January 2002 to March 2022. We extracted data from relevant studies, assessed their methodological quality, and narratively summarized results. Reporting of this review is in line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR).

RESULTS

Fifty-six studies of neurorehabilitation (n = 3), cognitive rehabilitation (n = 6), exercise training (n = 9) and self-management (n = 38) interventions were included in this review. The studies were predominantly from North America (n = 44; 73%) or Europe (n = 12; 20%) and included 4280 participants. Most participants (n = 3669; 86%) were Caucasians. Less than 10% of participants were Black (n = 282), Latinx/Hispanic (n = 60), Asian (n = 46), Indigenous (n = 7), or Arab (n = 2). Few studies discussed how race and/or ethnicity were considered in trial planning or execution.

CONCLUSIONS

Without consistent and systematic attention to race and ethnicity, both in terms of trial design and reporting, it is impossible to know how MS rehabilitation interventions will translate into real-world applications. This call to action - to the MS rehabilitation research community to ensure trial and intervention processes that accommodate the needs of diverse racial and ethnic groups - is an important first step in addressing inequities in rehabilitation care for persons with MS.

摘要

背景

多发性硬化症(MS)在许多种族和族裔群体中普遍存在,并且不成比例地影响少数族裔人群。康复干预是综合 MS 护理的重要组成部分。然而,我们不知道 MS 康复试验在定义资格标准、规划招募策略、选择结果测量、支持干预交付以及设计促进依从性和保留率的方法时,在多大程度上考虑了种族和族裔。

方法

我们对五个数据库(MEDLINE、CINAHL、Cochrane Central、EMBASE 和 Web of Science)进行了范围审查,以定位 2002 年 1 月至 2022 年 3 月发表的随机对照康复试验。我们从相关研究中提取数据,评估其方法学质量,并进行叙述性总结结果。本综述的报告符合系统评价和荟萃分析扩展的首选报告项目(PRISMA-ScR)。

结果

本综述共纳入 56 项神经康复(n=3)、认知康复(n=6)、运动训练(n=9)和自我管理(n=38)干预措施的研究。这些研究主要来自北美(n=44;73%)或欧洲(n=12;20%),共纳入 4280 名参与者。大多数参与者(n=3669;86%)为白种人。黑种人(n=282)、拉丁裔/西班牙裔(n=60)、亚洲人(n=46)、原住民(n=7)或阿拉伯人(n=2)参与者不到 10%。很少有研究讨论种族和/或族裔在试验规划或执行中是如何考虑的。

结论

如果不在试验设计和报告中始终如一地系统关注种族和族裔问题,就不可能知道 MS 康复干预措施将如何转化为实际应用。这一行动呼吁——MS 康复研究界确保试验和干预过程能够满足不同种族和族裔群体的需求——是解决多发性硬化症患者康复护理中的不平等问题的重要第一步。

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