Understanding stigma in multiple sclerosis: workplace discrimination, social challenges and psychological impacts.

IF 2 4区医学 Q3 CLINICAL NEUROLOGY

Acta neurologica Belgica Pub Date : 2025-06-24 DOI:10.1007/s13760-025-02826-8

Nazlı Gamze Bülbül, Abdulkadir Tunç, Sena Destan Bünül, Serkan Demir, Meral Seferoğlu, Ali Özhan Sıvacı, Selma Aksoy, İpek Güngör Doğan, Ülgen Yalaz Tekan, Nefise Eda Arslanoğlu, Samet Öncel, Rıfat Erdem Toğrol, Hüsnü Efendi

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Abstract

Background: Stigmatization in MS patients is an important problem that affects social interaction, work life and daily life. In this study, we investigated the prevalence, severity and especially the effects of stigmatization on work life in MS patients.

Methods: A cross-sectional study of 420 people living with MS (PwMS) assessed stigma using the NeuroQoL Stigma Short Form and a direct stigma survey. Demographic, clinical, workplace, and social data were collected through an online survey. Statistical analyses were performed.

Results: Stigma was prevalent, with 77% reporting stigma in direct surveys and 67.6% scoring > 8 on the NeuroQoL Stigma Short Form. Stigma was more severe in patients with progressive MS and higher EDSS scores. The most disturbing symptoms were fatigue (73.3%), imbalance (46.7%) and attention deficit 50.5%). The most prominent complaint affecting work life was fatigue (41.2%). Only 7.3% of the patients had sought psychological support for this issue. 57.4% of patients had disclosed their illness to their employer and 68.1% to their coworkers.

Conclusions: Stigma in MS is pervasive, linked to clinical severity, workplace challenges, and social withdrawal. Interventions targeting stigma's psychological and social dimensions, along with workplace education and support are essential.

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了解多发性硬化症的污名：工作场所歧视、社会挑战和心理影响。

背景：MS患者的污名化是一个影响社会交往、工作生活和日常生活的重要问题。在本研究中，我们调查了MS患者的患病率、严重程度，特别是污名化对工作生活的影响。方法：对420名多发性硬化症（PwMS）患者进行横断面研究，使用NeuroQoL病耻感短表和直接病耻感调查来评估病耻感。通过在线调查收集了人口统计、临床、工作场所和社会数据。进行统计学分析。结果：病耻感普遍存在，77%的人在直接调查中报告病耻感，67.6%的人在NeuroQoL病耻感简表上得分为bb80分。进展性MS患者的病耻感更严重，EDSS评分更高。最令人不安的症状是疲劳（73.3%）、失衡（46.7%）和注意力缺陷（50.5%）。影响工作生活的最主要抱怨是疲劳（41.2%）。仅有7.3%的患者为此寻求过心理支持。57.4%的病人曾向雇主透露病情，68.1%曾向同事透露病情。结论：病耻感在多发性硬化症中普遍存在，与临床严重程度、工作场所挑战和社会退缩有关。针对耻辱心理和社会层面的干预措施以及工作场所教育和支持至关重要。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Acta neurologica Belgica 医学-临床神经学

CiteScore

4.20

自引率

3.70%

发文量

300

审稿时长

6-12 weeks

期刊介绍： Peer-reviewed and published quarterly, Acta Neurologica Belgicapresents original articles in the clinical and basic neurosciences, and also reports the proceedings and the abstracts of the scientific meetings of the different partner societies. The contents include commentaries, editorials, review articles, case reports, neuro-images of interest, book reviews and letters to the editor. Acta Neurologica Belgica is the official journal of the following national societies: Belgian Neurological Society Belgian Society for Neuroscience Belgian Society of Clinical Neurophysiology Belgian Pediatric Neurology Society Belgian Study Group of Multiple Sclerosis Belgian Stroke Council Belgian Headache Society Belgian Study Group of Neuropathology