Australian MS Longitudinal Study, Canberra Hospital, PO Box 11, Level 2 East, Building 5, Woden, ACT 2606, Australia.
J Neurol. 2010 Jun;257(6):926-36. doi: 10.1007/s00415-009-5441-7. Epub 2010 Jan 19.
People with multiple sclerosis (MS) tend to have lower participation in paid employment compared to those with other chronic diseases. In two large-sample, self-report surveys of MS patients performed 4 years apart, employment rates were measured both cross-sectionally and longitudinally. The reasons for employment loss and perceived risk of future employment loss were also assessed. A total of 1,135 patients responded to the first survey, 1,329 to the second, and 667 to both. Longitudinal loss of employment was 5.4% over the 4 years 2003-2007, a period of relative national economic prosperity. By 2007, 56% of MS patients had lost employment due to MS and 64% were not in the paid labour force. Regression analysis indicated that men were more likely than women to leave their employment because of their MS, and older people were more likely than younger ones to do so. Level of occupational skill using Australian Bureau of Statistics categorisation was not predictive of maintaining or losing employment. The main reasons reported by people with MS for their loss of employment involved the ineffective management of symptoms of MS in the workplace, rather than workplace-related factors including insufficient flexibility of employment conditions or being asked to leave or sacked. The most frequently listed symptoms relating to employment loss, and perceived risk of losing current employment, were fatigue, mobility-related symptoms, arm and hand difficulties, and cognitive deficits. These findings imply that many employees with MS are leaving their planning for effective symptom management, and for appropriate accommodations in the workplace, until such planning is too late to be effective. The potential advantages of early, supported disclosure of diagnosis to employers before MS symptoms become a problem are discussed.
多发性硬化症 (MS) 患者的就业参与率往往低于其他慢性病患者。在相隔 4 年进行的两次大型 MS 患者自我报告调查中，分别从横断面和纵向测量了就业率。还评估了就业损失的原因和对未来就业损失的感知风险。共有 1135 名患者对第一次调查做出了回应，1329 名患者对第二次调查做出了回应，667 名患者对两次调查都做出了回应。2003-2007 年期间，4 年内就业的纵向损失为 5.4%，这是一个相对国家经济繁荣的时期。到 2007 年，56%的多发性硬化症患者因多发性硬化症而失去工作，64%的人没有参加有偿劳动。回归分析表明，男性比女性更有可能因多发性硬化症而离开工作岗位，而老年人比年轻人更有可能这样做。使用澳大利亚统计局分类的职业技能水平并不能预测保持或失去就业。多发性硬化症患者报告的失业主要原因涉及在职场中无法有效管理多发性硬化症的症状，而不是与工作场所相关的因素，包括就业条件缺乏灵活性，或被要求离职或被解雇。与就业损失和当前就业丧失风险相关的最常见症状是疲劳、与移动性相关的症状、手臂和手部困难以及认知缺陷。这些发现意味着许多多发性硬化症患者直到无法有效地进行计划之前，都不会对有效的症状管理和工作场所的适当适应进行规划。讨论了在多发性硬化症症状成为问题之前，向雇主早期、有支持地披露诊断的潜在优势。
