Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, SE-171 77, Stockholm, Sweden.
Division of Neurology, Department of Clinical Neuroscience, Karolinska Institutet, SE-171 77, Stockholm, Sweden.
Eur J Neurol. 2023 Jul;30(7):1843-1853. doi: 10.1111/ene.15790. Epub 2023 Mar 30.
The heterogeneous symptoms of multiple sclerosis (MS) can considerably impact the lives of people with MS (PwMS). The aim of this study was to describe the extent of restrictions in different life domains that PwMS experience in relation to their symptoms and level of disability.
A cross-sectional survey was conducted among working-age PwMS in Sweden. The 4052 participants who answered the questions on restrictions in work and private life domains (family, leisure activities, and contact with friends/acquaintances) were included. Predictors of restrictions in the four domains were determined through multinomial logistic regression.
Approximately one-third of the PwMS reported no restrictions in the domains of work (35.7%), family (38.7%), leisure activities (31.1%) or contact with friends/acquaintances (40.3%), the remaining participants reported moderate to severe restrictions. Tiredness/fatigue was the most commonly reported most-limiting symptom (49.5%). PwMS with Expanded Disability Status Scale (EDSS) scores of zero reported restrictions in life domains ranging from 39.6% (friends/acquaintances) to 45.7% (leisure activities). Age, sex, education, type of living area, MS type, type of most-limiting symptom, and EDSS score predicted restrictions in work and private life domains.
Most PwMS reported similar levels of restrictions in both their work and private lives. Restrictions in these life domains were also reported by PwMS with low disability levels (EDSS = 0) and were often associated with invisible symptoms such as fatigue. Even in a contemporary MS cohort, close to 90% of PwMS report limitations due to MS.
多发性硬化症（MS）的症状多种多样，会对 MS 患者（PwMS）的生活造成很大影响。本研究旨在描述 PwMS 因症状和残疾程度不同而在不同生活领域受限的程度。
对瑞典的工作年龄 PwMS 进行了横断面调查。共纳入 4052 名回答了工作和私人生活领域（家庭、休闲活动和与朋友/熟人的联系）受限问题的 PwMS。通过多项逻辑回归确定四个领域受限的预测因素。
约三分之一的 PwMS 报告在工作（35.7%）、家庭（38.7%）、休闲活动（31.1%）或与朋友/熟人的联系（40.3%）领域没有受限，其余参与者报告存在中度至重度受限。疲劳/乏力是最常见的受限症状（49.5%）。EDSS 评分为零的 PwMS 在生活领域的受限程度从 39.6%（朋友/熟人）到 45.7%（休闲活动）不等。年龄、性别、教育程度、居住区域类型、MS 类型、最受限症状类型和 EDSS 评分均预测了工作和私人生活领域的受限。
大多数 PwMS 在工作和私人生活中都报告了相似程度的受限。残疾程度较低（EDSS=0）的 PwMS 也报告了这些生活领域的受限，且这些受限往往与疲劳等无形症状有关。即使在当代 MS 队列中，仍有近 90%的 PwMS 报告因 MS 导致的限制。
