Bülbül Nazlı Gamze, Tunç Abdulkadir, Bünül Sena Destan, Demir Serkan, Seferoğlu Meral, Sıvacı Ali Özhan, Aksoy Selma, Doğan İpek Güngör, Tekan Ülgen Yalaz, Arslanoğlu Nefise Eda, Öncel Samet, Toğrol Rıfat Erdem, Efendi Hüsnü
Department of Neurology, University Of Health Sciences, Sultan Abdulhamid Han Research and Training Hospital, Istanbul, Turkey.
Faculty of Medicine, Department of Neurology, Sakarya University, Sakarya, Turkey.
Acta Neurol Belg. 2025 Jun 24. doi: 10.1007/s13760-025-02826-8.
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.
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.
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.
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.
多发性硬化症（MS）患者的污名化是一个影响社交互动、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患者污名化的患病率、严重程度，尤其是其对工作生活的影响。
对420名多发性硬化症患者（PwMS）进行横断面研究，使用神经生活质量污名简表和直接污名调查来评估污名化情况。通过在线调查收集人口统计学、临床、工作场所和社会数据，并进行统计分析。
污名化现象普遍存在，77%的患者在直接调查中报告有污名化情况，67.6%的患者在神经生活质量污名简表上得分超过8分。进展型MS患者和扩展残疾状态量表（EDSS）得分较高的患者污名化情况更严重。最困扰患者的症状是疲劳（73.3%）、失衡（46.7%）和注意力缺陷（50.5%）。影响工作生活最突出的抱怨是疲劳（41.2%）。只有7.3%的患者为此问题寻求过心理支持。57.4%的患者已向雇主披露自己的病情，68.1%的患者已向同事披露。
MS患者中的污名化现象普遍存在，与临床严重程度、工作场所挑战和社交退缩有关。针对污名化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。
