Department of Neurology, Norwegian Multiple Sclerosis Competence Centre, Haukeland University Hospital, PB 1400, 5021, Bergen, Norway.
Department of Business and Science, Norwegian School of Economics, Bergen, Norway.
Eur J Health Econ. 2018 Dec;19(9):1243-1257. doi: 10.1007/s10198-018-0971-5. Epub 2018 Apr 21.
Multiple sclerosis (MS) imposes high economic costs on society, but the patients and their families have to bear some of these costs.
We aimed to estimate the magnitude of these economic costs in Norway.
We collected data through a postal questionnaire survey targeting 922 MS patients in Hordaland County, western Norway, in 2013-2014; 546 agreed to participate and were included. The questionnaire included clinical and demographic characteristics, volume and cost of MS-related resource use, work participation, income, government financial support, and disability status.
The mean annual total economic costs for the patients and their families were €11,603. Indirect costs accounted for 66% and were lower for women than for men. The direct costs were nearly identical for men and women. The costs increased up to Expanded Disability Status Scale score 6 except for steps between 3 and 4 where it remained nearly constant. The costs reduced from EDSS 6 to 8, and increased from 8 to 9. Lifetime costs ranged from €24,897 to €70,021 for patients with late disease onset and slow progression, and between €441,934 and €574,860 for patients with early onset and rapid progression.
The economic costs of MS impose a heavy burden on the patients and their families. Supplementing the information on the cost of MS to society, our finding should be included as background information in decisions on reimbursing and allocating public resources for the well-being of MS patients and their families.
多发性硬化症（MS）给社会带来了高昂的经济负担，但患者及其家属也不得不承担其中的一部分。
我们旨在评估挪威多发性硬化症患者的经济负担。
我们通过邮寄问卷调查的方式，于 2013 年至 2014 年，对挪威西部霍达兰郡的 922 名多发性硬化症患者进行了数据收集；其中 546 名患者同意参与研究并被纳入分析。问卷内容包括临床和人口统计学特征、多发性硬化症相关资源使用的数量和成本、工作参与、收入、政府财政支持和残疾状况。
患者及其家属的年平均总经济成本为 11603 欧元。间接成本占 66%，女性的间接成本低于男性。男性和女性的直接成本几乎相同。成本增加到扩展残疾状态量表（EDSS）评分 6 分，除了 3 到 4 分之间几乎不变外。从 EDSS 6 分到 8 分，成本降低，从 8 分到 9 分，成本增加。对于发病晚、进展缓慢的患者，终身成本范围为 24897 欧元至 70021 欧元，对于发病早、进展迅速的患者，终身成本范围为 441934 欧元至 574860 欧元。
多发性硬化症的经济负担给患者及其家属带来了沉重的负担。除了社会对多发性硬化症成本的了解外，我们的研究结果还应作为决策的背景信息，用于报销和分配公共资源，以满足多发性硬化症患者及其家属的福利需求。
