Kobelt Gisela, Berg Jenny, Lindgren Peter, Jönsson Bengt
Lund University, Lund, Sweden.
Eur J Health Econ. 2006 Sep;7 Suppl 2:S5-13. doi: 10.1007/s10198-006-0365-y.
The objective of this observational study in nine European countries was to establish the current cost of MS at different levels of disease severity. The study used a prevalence-based bottom-up to estimate costs from a societal perspective. Patients were recruited via patient organizations and neurology centres and asked by mail to complete a detailed questionnaire concerning their resource consumption, work capacity, quality of life and current disease status. Resources included all health-care and social services, personal expenditures, informal care and temporary or definitive work absence. Quality of life was collected as utility and disease information collected related to functional capacity, relapses and fatigue. The data were analyzed separately for each country, using local unit costs but a fully standardized methodology. A total of 13 186 patients at all levels of disease severity participated in the survey, with an average response rate of around 40% (range 20-75%). This paper describes the methodology used for the study, while results are presented in the individual country reports.
这项在九个欧洲国家开展的观察性研究的目的是确定不同疾病严重程度下多发性硬化症（MS）的当前成本。该研究采用基于患病率的自下而上方法，从社会角度估算成本。通过患者组织和神经科中心招募患者，并通过邮件要求他们填写一份关于其资源消耗、工作能力、生活质量和当前疾病状况的详细问卷。资源包括所有医疗保健和社会服务、个人支出、非正式护理以及临时或永久性缺勤。生活质量以效用值形式收集，疾病信息收集内容涉及功能能力、复发情况和疲劳程度。针对每个国家分别使用当地单位成本但采用完全标准化的方法对数据进行分析。共有13186名处于不同疾病严重程度的患者参与了调查，平均回复率约为40%（范围为20%-75%）。本文描述了该研究使用的方法，而结果在各个国家报告中呈现。
