Costs and quality of life of patients with multiple sclerosis in Europe
Costs and quality of life of patients with multiple sclerosis in Europe
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DOI：
10.1136/jnnp.2006.090365
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发表时间：
2006-08-01
影响因子：
11
通讯作者：
Jonsson, B.
中科院分区：
文献类型：
--
作者：
Kobelt, G.;Berg, J.;Jonsson, B.
目的：评估欧洲9个国家多发性硬化症患者的总体资源消耗、工作能力和生活质量。方法：采用标准化的预测问卷收集13186例多发性硬化症患者的多发性硬化症相关资源消耗、亲属非正式护理、生产力损失和总体生活质量(效用)的信息。有关疾病的信息包括病程、自我评估的疾病严重程度和复发。结果：患者的平均年龄从45.1岁到53.4岁，代表了所有疾病的严重程度。16%至29%的患者报告在数据收集之前的3个月内经历了复发。因多发性硬化症而提前退休的患者比例从33%到45%不等。各国对直接医疗资源(如住院、会诊和药物)的使用差别很大，而对非医疗资源(如拐杖、轮椅、改装房屋和汽车)和服务(如家庭护理和交通)的使用情况是相似的。非正式护理的使用与疾病的严重程度高度相关，但进一步受到医疗保健系统和家庭结构的影响。随着疾病的恶化，所有类型的费用都会增加。每名患者的年平均总费用(根据国内生产总值购买力调整)估计为：轻度疾病18000欧元(扩展残疾状况量表)，中度疾病36500欧元(扩展残疾状况量表4.0-6.5)，重度疾病62000欧元(扩展残疾状况量表7.0)。各国的效用相似，EDSS为2.0的患者约为0.70，EDSS为6.5的患者约为0.45。据估计，每个患者的无形成本约为13000欧元。
Objective: To assess overall resource consumption, work capacity and quality of life of patients with multiple sclerosis in nine European countries.Methods: Information on resource consumption related to multiple sclerosis, informal care by relatives, productivity losses and overall quality of life (utility) was collected with a standardised pre-tested questionnaire from 13186 patients enrolled in national multiple sclerosis societies or followed up in neurology clinics. Information on disease included disease duration, self-assessed disease severity and relapses. Mean annual costs per patient (Euro, 2005) were estimated from the societal perspective.Results: The mean age ranged from 45.1 to 53.4 years, and all levels of disease severity were represented. Between 16% and 29% of patients reported experiencing a relapse in the 3 months preceding data collection. The proportion of patients in early retirement because of multiple sclerosis ranged from 33% to 45%. The use of direct medical resources (eg, hospitalisation, consultations and drugs) varied considerably across countries, whereas the use of non-medical resources (eg, walking sticks, wheel chairs, modifications to house and car) and services (eg, home care and transportation) was comparable. Informal care use was highly correlated with disease severity, but was further influenced by healthcare systems and family structure. All types of costs increased with worsening disease. The total mean annual costs per patient (adjusted for gross domestic product purchasing power) were estimated at Euro 18000 for mild disease (Expanded Disability Status Scale (EDSS) < 4.0), Euro 36500 for moderate disease (EDSS 4.0-6.5) and Euro 62000 for severe disease (EDSS > 7.0). Utility was similar across countries at around 0.70 for a patient with an EDSS of 2.0 and around 0.45 for a patient with an EDSS of 6.5. Intangible costs were estimated at around Euro 13000 per patient.