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与多发性硬化症患者就业变化相关的人口统计学和临床因素。

Demographic and clinical factors associated with changes in employment in multiple sclerosis.

机构信息

The Walton Centre for Neurology and Neurosurgery, UK.

出版信息

Mult Scler. 2013 Oct;19(12):1647-54. doi: 10.1177/1352458513481396. Epub 2013 May 7.

Abstract

OBJECTIVE

The objective of this paper is to investigate demographic and disease factors associated with changes in employment role and status in multiple sclerosis (MS).

METHODS

Questionnaires on current symptoms, employment status and factors associated with changes in employment were sent to a community sample of 566 MS patients.

RESULTS

A total of 221 completed questionnaires were analysed. Of 169 employed at diagnosis, 43.3% had left employment at a mean of 11.9 years after disease onset. Of those still employed, 55% had changed their role or working hours to accommodate symptoms relating to their disease. These patients reported greater fatigue (p = 0.001), pain (p = 0.033) and memory problems (p = 0.038) than those whose employment had remained unaffected. Multinomial logistic regression revealed the factors most strongly predictive of employment status were disability level, years of education, disease duration and fatigue (p = 0.032).

CONCLUSIONS

Despite changes to public perceptions and legislative protection over the last 20 years, high rates of MS patients still leave the workforce prematurely, reduce working hours or change employment roles. These data have significant implications when considering social and economic impacts of MS, support the value of employment metrics as long-term outcome measures, and demonstrate the need to improve employment requirements and flexibility of working practices in individuals with MS.

摘要

目的

本文旨在研究与多发性硬化症(MS)患者就业角色和状态变化相关的人口统计学和疾病因素。

方法

向 566 名 MS 患者的社区样本发送了一份关于当前症状、就业状况以及与就业变化相关因素的问卷。

结果

共分析了 221 份完整的问卷。在诊断时就业的 169 人中,43.3%在发病后平均 11.9 年内离开了工作岗位。那些仍在工作的人中,55%已经改变了他们的角色或工作时间,以适应与疾病相关的症状。这些患者报告的疲劳(p = 0.001)、疼痛(p = 0.033)和记忆问题(p = 0.038)比那些就业未受影响的患者更严重。多项逻辑回归显示,最能预测就业状况的因素是残疾程度、受教育年限、疾病持续时间和疲劳(p = 0.032)。

结论

尽管在过去 20 年中,公众观念和立法保护发生了变化,但仍有很高比例的 MS 患者过早地离开劳动力队伍,减少工作时间或改变就业角色。当考虑多发性硬化症的社会和经济影响时,这些数据具有重要意义,支持将就业指标作为长期结果衡量标准的价值,并表明需要改善多发性硬化症患者的就业要求和工作实践的灵活性。

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