目的: 调查多发性硬化患者的疾病负担与经济负担,为进一步提高我国多发性硬化患者疾病管理水平提供实证数据支持。方法: 在医疗机构中,对多发性硬化患者进行横断面调查,分析965名多发性硬化患者诊疗情况、疾病负担和疾病经济负担,使用广义线性模型分析代表患者残疾程度的扩展致残量表（EDSS）分数与费用之间的关联。结果: 研究发现,多发性硬化患者延迟就医和延迟确诊情况普遍存在,有82%的患者处于就业年龄,而其中有25%的患者处于长期病假、失业或退休状态,疾病负担严重。同时,疾病进展也对患者日常活动、心理与认知功能产生严重负面影响。随着EDSS评分增加,疾病经济负担显著加重。结论: 应当重视疾病早期诊断和治疗,以缓解多发性硬化病情发展对患者家庭及社会带来的沉重负担。
Abstract
Objective: The paper investigated the disease burden and economic burden of patients with multiple sclerosis (MS) to provide empirical data for further improving the management of MS patients in China. Methods: Cross-sectional survey was conduted in hospitals to analyze patients' diagnosis and treatment, disease burden and economic burden. Generalized linear models (GLMs) were used to model the association between the current EDSS score and costs. Results: Delayed medical diagnosis and treatment were common among patients with MS. 82% of the patients are of working age, among which 25% are in long-term sick leave, unemployment or retirement, with a serious disease burden. At the same time, disease progression also has serious negative impact on patients' daily activities, psychological and cognitive functions. As the EDSS score increases, the economic burden increases significantly. Conclusion: Early diagnosis and treatment of the MS should be emphasized to alleviate the severe burden to the patients' family and the whole society.
关键词
多发性硬化 /
疾病负担 /
疾病经济负担 /
社会视角 /
中国
Key words
multiple sclerosis /
burden of disease /
economic burden of disease /
societal perspective /
China
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