Psychology Department, Royal Holloway, University of London, Egham, UK.
Molecular and Integrative Biology, Institute of Systems, University of Liverpool, Liverpool, UK.
BMC Neurol. 2024 Sep 14;24(1):346. doi: 10.1186/s12883-024-03853-3.
Stigma is increasingly recognised as contributing to disability in MS. This systematic review aimed to answer the following question: To what extent is stigma associated with psychological and physical health outcomes in MS?
The inclusion criteria were: scientific publication of original quantitative research in adults with MS and/or Clinically Isolated Syndrome; outcome measures including a measurement of stigma and psychological and/or physical health; peer reviewed articles in the English language. Pubmed, PsycINFO and Science Direct were searched in November 2023. The Joanna Briggs Institute Critical Appraisal Tool was used to assess the methodological quality and risk of bias in all of the identified studies. The following data was extracted: (1) author and publication year, (2) country, (3) design, (4) sample size and demographics, (5) stigma measure, (6) psychological and/or physical health outcomes, 8) key findings.
18 Studies were identified, reporting in total 22,021 adult participants with multiple sclerosis, with individual sample sizes ranging from 33 to 6,670. The review consistently identified stigma to be significantly associated with adverse psychological and physical health outcomes in all 18 identified studies. Over half of all identified studies investigated depression and stigma and over half investigated quality of life and stigma, and a significant association was demonstrated for both of these variables with stigma in all of these studies.
Limitations are that most studies were Western with primarily white participants. Only variables studied could be reported and therefore only a selective perspective of stigma in MS could be explored. A meta-analysis was not feasible, due to the variety of stigma definitions and measures employed. A model of stigma in MS is presented and possible interventions to manage stigma in MS are discussed. A need for international action to develop a consensus measure of MS stigma and determine the trajectory and causal dynamics of MS stigma is highlighted.
污名化越来越被认为是导致多发性硬化症患者残疾的一个因素。本系统评价旨在回答以下问题：污名化在多大程度上与多发性硬化症患者的心理和身体健康结果相关？
纳入标准为：发表在成人多发性硬化症和/或临床孤立综合征患者中的原始定量研究的科学出版物；结局测量指标包括污名化以及心理和/或身体健康的测量；同行评审的英文文章。2023 年 11 月在 Pubmed、PsycINFO 和 Science Direct 上进行了检索。使用 Joanna Briggs 研究所批判性评估工具评估了所有确定研究的方法学质量和偏倚风险。提取的数据如下：（1）作者和出版年份，（2）国家，（3）设计，（4）样本量和人口统计学，（5）污名化测量，（6）心理和/或身体健康结果，（8）主要发现。
共确定了 18 项研究，共报告了 22021 名多发性硬化症成年患者，各研究的样本量从 33 到 6670 不等。18 项研究均一致表明，污名化与所有研究中的不良心理和身体健康结果显著相关。超过一半的研究调查了抑郁和污名化，超过一半的研究调查了生活质量和污名化，所有这些研究都表明这两个变量与污名化存在显著关联。
局限性在于，大多数研究为西方研究，参与者主要为白人。只能报告已研究的变量，因此只能探索多发性硬化症污名化的一个选择性视角。由于使用的污名化定义和测量方法多种多样，因此无法进行荟萃分析。提出了多发性硬化症污名化模型，并讨论了管理多发性硬化症污名化的可能干预措施。强调需要国际行动来制定多发性硬化症污名化的共识测量方法，并确定多发性硬化症污名化的轨迹和因果动态。
