Medical Department, Roche Farma, Madrid, Spain.
Department of Neurology, Hospital Universitario Gregorio Marañón, Madrid, Spain.
Mult Scler Relat Disord. 2020 Jun;41:102046. doi: 10.1016/j.msard.2020.102046. Epub 2020 Mar 7.
In Multiple Sclerosis (MS), withdrawal from employment is a critical problem. This study explores relationships between disease characteristics, work difficulties, health-related quality of life, depression, and stigma and how these factors affect employment status.
A multicenter, non-interventional, cross-sectional study was conducted in adults with relapsing-remitting MS (RRMS) and primary progressive MS (PPMS). Patient-reported questionnaires included: 23-item Multiple Sclerosis Work Difficulties Questionnaire, 29-item Multiple Sclerosis Impact Scale, Stigma Scale for Chronic Illness, and Beck Depression Inventory-Fast Screen.
A total of 199 individuals (mean age = 43.9 ± 10.5 years, 60.8% female, 86.4% with RRMS) participated in the study. Mean time from diagnosis was 9.6 ± 7.2 years and median Expanded Disability Status Scale score was 2.0 (interquartile range: 1.0-3.5). Employment rate was 47.2% (n = 94). Mean physical and psychological MSIS-29 impact sub-scores were 40.38 ± 17.1 and 20.24 ± 7.8, respectively. Forty patients (19.9%) had at least one SSCI-8 item with a score of 4 or 5, suggesting the presence of stigma often or always. Eighty-one patients (40.7%) were depressed and 25 (12.6%) had moderate-to-severe depression. Work difficulties were higher in those with worse functional status, a diagnosis of PPMS, and lower educational levels. Employed participants had lower perceptions of stigma and depressive symptoms than those not employed. Higher perceptions of stigma were also strongly linked to higher physical and psychological impact on health-related quality of life and greater work difficulties. Depressive symptoms were also strongly related to work-related problems.
Work difficulties, stigma and poor quality of life are common in MS patients, even in a population with low physical disability. Evaluation of these dimensions in clinical practice would allow the development of targeted rehabilitation and specific work plans for MS employers.
在多发性硬化症（MS）中，失业是一个关键问题。本研究探讨了疾病特征、工作困难、健康相关生活质量、抑郁和污名与就业状况之间的关系。
这是一项多中心、非干预性、横断面研究，纳入了复发缓解型多发性硬化症（RRMS）和原发性进展型多发性硬化症（PPMS）成年患者。患者报告的问卷包括：23 项多发性硬化症工作困难问卷、29 项多发性硬化症影响量表、慢性病污名量表和贝克抑郁快速筛查。
共 199 名患者（平均年龄 43.9 ± 10.5 岁，60.8%为女性，86.4%为 RRMS）参与了研究。从诊断到现在的平均时间为 9.6 ± 7.2 年，扩展残疾状况量表的中位数为 2.0（四分位距：1.0-3.5）。就业率为 47.2%（n=94）。MSIS-29 影响量表的生理和心理亚量表平均得分分别为 40.38 ± 17.1 和 20.24 ± 7.8。40 名患者（19.9%）至少有一项 SSCI-8 项的得分达到 4 或 5，表明存在污名且程度经常或总是存在。81 名患者（40.7%）抑郁，25 名患者（12.6%）有中重度抑郁。功能状态较差、诊断为 PPMS 和教育程度较低的患者工作困难更大。与未就业者相比，就业者对污名和抑郁症状的认知度较低。较高的污名认知度也与健康相关生活质量的生理和心理影响以及更大的工作困难高度相关。抑郁症状也与工作相关问题密切相关。
即使在残疾程度较低的人群中，多发性硬化症患者也普遍存在工作困难、污名和较差的生活质量。在临床实践中评估这些维度，可以为多发性硬化症雇主制定有针对性的康复和特定的工作计划。
