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加拿大多发性硬化症患者群体的多样性特征:一项范围综述。

Characterizing the diversity of the multiple sclerosis population in Canada: A scoping review.

作者信息

Marrie Ruth Ann, Fakolade Afolasade, Linton Janice, Maxwell Colleen J, Rotstein Dalia, Schindell Brayden, Tremlett Helen, Yeh Ann, Finlayson Marcia

机构信息

Department of Medicine, Faculty of Medicine, Dalhousie University, Halifax, NS, Canada; Department of Internal Medicine, Max Rady College of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.

School of Rehabilitation Therapy, Queen's University, Kingston, ON, Canada.

出版信息

Mult Scler J Exp Transl Clin. 2025 Mar 17;11(1):20552173251321814. doi: 10.1177/20552173251321814. eCollection 2025 Jan-Mar.

Abstract

BACKGROUND

This scoping review aimed to identify existing information and gaps in knowledge regarding the diversity characteristics of the multiple sclerosis (MS) population in Canada.

METHODS

We searched MEDLINE, EMBASE, Cumulated Index in Nursing and Allied Health Literature (CINAHL), SCOPUS and ProQuest's global dataset of theses and dissertations from 2010 to January 12, 2024. Data sources were case reports/series, cohort studies, case-control studies, analytical cross-sectional studies, randomized clinical trials, qualitative, mixed methods, participatory studies and systematic reviews conducted in Canada, published in English or French, that included participants with clinically isolated syndrome or MS. Sample characteristics were extracted applying Cochrane's PROGRESS-Plus framework.

RESULTS

We included 259 studies, most often studying disease-modifying therapy (24.3%) and access to care (20.9%). Among primary data collection studies 40% used one recruitment strategy, usually MS Clinics and MS Canada. Age (92.7%) and sex (86.9%) were reported most often, ≤10% of studies reported race or ethnicity; religion, sexual orientation and language were not reported.

CONCLUSIONS

We lack an understanding of characteristics of people living with MS in Canada relevant to health equity. Existing research has been insufficiently inclusive. Better reporting of diversity characteristics is needed, along with specific efforts to recruit and retain more diverse samples.

摘要

背景

本范围综述旨在确定加拿大多发性硬化症(MS)患者群体的多样性特征方面的现有信息和知识空白。

方法

我们检索了MEDLINE、EMBASE、护理及相关健康文献累积索引(CINAHL)、SCOPUS以及ProQuest从2010年至2024年1月12日的全球论文数据集。数据来源包括在加拿大开展的、以英文或法文发表的病例报告/系列、队列研究、病例对照研究、分析性横断面研究、随机临床试验、定性研究、混合方法研究、参与性研究和系统评价,纳入了患有临床孤立综合征或MS的参与者。应用Cochrane的PROGRESS-Plus框架提取样本特征。

结果

我们纳入了259项研究,其中最常研究的是疾病修饰治疗(24.3%)和医疗服务可及性(20.9%)。在主要数据收集研究中,40%使用了一种招募策略,通常是MS诊所和加拿大MS协会。年龄(92.7%)和性别(86.9%)是报告最频繁的因素,≤10%的研究报告了种族或民族;宗教、性取向和语言未被报告。

结论

我们对加拿大MS患者与健康公平相关的特征缺乏了解。现有研究的包容性不足。需要更好地报告多样性特征,并做出具体努力来招募和保留更多样化的样本。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9feb/11915319/2ce1b1a73b46/10.1177_20552173251321814-fig1.jpg

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