Kobelt G, Berg J, Lindgren P, Fredrikson S, Jönsson B
Lund University, Lund, Sweden.
J Neurol Neurosurg Psychiatry. 2006 Aug;77(8):918-26. doi: 10.1136/jnnp.2006.090365. Epub 2006 May 11.
To assess overall resource consumption, work capacity and quality of life of patients with multiple sclerosis in nine European countries.
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 13,186 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.
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 18,000 for mild disease (Expanded Disability Status Scale (EDSS) <4.0), Euro 36,500 for moderate disease (EDSS 4.0-6.5) and Euro 62,000 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 13,000 per patient.
评估9个欧洲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。
通过一份标准化的预测试问卷，收集了13186名加入国家多发性硬化症协会或在神经科诊所接受随访的患者与多发性硬化症相关的资源消耗、亲属的非正式护理、生产力损失和总体生活质量（效用）等信息。疾病信息包括病程、自我评估的疾病严重程度和复发情况。从社会角度估算了每位患者的年均成本（欧元，2005年）。
患者的平均年龄在45.1岁至53.4岁之间，涵盖了所有疾病严重程度级别。16%至29%的患者报告在数据收集前3个月内有过复发。因多发性硬化症提前退休的患者比例在33%至45%之间。各国直接医疗资源（如住院、会诊和药物）的使用差异很大，而非医疗资源（如拐杖、轮椅、房屋和汽车改造）和服务（如家庭护理和交通）的使用情况相当。非正式护理的使用与疾病严重程度高度相关，但还受到医疗保健系统和家庭结构的进一步影响。所有类型的成本都随着疾病恶化而增加。每位患者的年均总成本（根据国内生产总值购买力调整），轻度疾病（扩展残疾状态量表（EDSS）<4.0）估计为18000欧元，中度疾病（EDSS 4.0 - 6.5）为36500欧元，重度疾病（EDSS>7.0）为62000欧元。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。无形成本估计约为每位患者13000欧元。
