Kobelt Gisela, Eriksson Jennifer, Phillips Glenn, Berg Jenny
European Health Economics, Mulhouse, France.
Mapi Group, Stockholm, Sweden.
Mult Scler. 2017 Aug;23(2_suppl):4-16. doi: 10.1177/1352458517708097.
This article describes the methods used to perform this large European-wide burden-of-illness study on multiple sclerosis (MS) using individual patient data.
The study collected all MS-related resource consumption, workforce participation, prevalent disease symptoms and health-related quality of life (HRQoL). Patients were recruited by national patient associations and, after informed consent, completed a specific questionnaire either on-line or on paper. Analyses were performed by country as well as for the study overall. Costs were estimated from the societal perspective, using publicly available unit costs and reported in national currencies and in EUR 2015 adjusted for purchasing power parity. The results are reported by disease severity groups according to self-assessed Expanded Disability Status Scale (EDSS) (mild, moderate, severe) and by EDSS point to highlight the development of costs as disability progresses.
A total of 16,808 patients in 16 countries participated in the study: Austria, Belgium, Denmark, Czech Republic, France, Germany, Hungary, Italy, the Netherlands, Poland, Portugal, Russia, Spain, Sweden, Switzerland and the United Kingdom.
This study, endorsed by the European Platform of MS Societies, provides up-to-date information on costs and expands the previously available information on HRQoL and symptoms.
本文介绍了利用个体患者数据对多发性硬化症（MS）开展这项全欧洲范围大型疾病负担研究时所采用的方法。
该研究收集了所有与MS相关的资源消耗、劳动力参与情况、常见疾病症状以及健康相关生活质量（HRQoL）。患者由各国患者协会招募，在获得知情同意后，通过在线或纸质方式填写一份特定问卷。分析按国家以及对整个研究进行。成本从社会角度进行估算，使用公开可得的单位成本，并以各国货币以及经购买力平价调整后的2015年欧元报告。结果按根据自我评估的扩展残疾状态量表（EDSS）划分的疾病严重程度组（轻度、中度、重度）以及按EDSS评分点进行报告，以突出随着残疾进展成本的变化情况。
16个国家的16,808名患者参与了该研究：奥地利、比利时、丹麦、捷克共和国、法国、德国、匈牙利、意大利、荷兰、波兰、葡萄牙、俄罗斯、西班牙、瑞典、瑞士和英国。
这项由欧洲多发性硬化症协会平台认可的研究提供了有关成本的最新信息，并扩展了先前关于HRQoL和症状的可用信息。
