Objectives

This systematic review aimed to comprehensively collect and summarise the current body of knowledge regarding the cost-of-illness of amyotrophic lateral sclerosis, to identify cost-driving factors of the disease and to consider the development of costs over the course of disease. Further, the review sought to assess the methodological quality of the selected studies.

Methods

A systematic review was performed using the databases MEDLINE, Embase, Cochrane Library and PsycINFO. Studies examining the economic burden of amyotrophic lateral sclerosis on a patient or national level written in English or German published from the year 2001 onwards were included. Additional searches were conducted. Study characteristics and results were extracted and compared.

Results

In summary, 20 studies were included in this review. Most studies investigated costs per patient, amounting to total costs between €9741€ to €114,605. Six studies confirmed a rise in costs with disease progression, peaking close to the death of a patient. National costs for amyotrophic lateral sclerosis varied between €149 million and €1329 million.

Conclusion

Most of these studies suggest the economic burden of amyotrophic lateral sclerosis to be considerable. However, further research is needed to establish a cost-effective health policy in consideration of disease severities.

中文翻译：

---

肌萎缩侧索硬化的经济负担：系统评价

目标

本系统综述旨在全面收集和总结有关肌萎缩侧索硬化症的疾病成本的现有知识体系，以确定该疾病的成本驱动因素，并考虑疾病过程中成本的发展。此外，该评价试图评估所选研究的方法学质量。

方法

使用数据库 MEDLINE、Embase、Cochrane Library 和 PsycINFO 进行了系统评价。从 2001 年开始发表的以英语或德语撰写的关于患者或国家层面肌萎缩侧索硬化的经济负担的研究被纳入。进行了额外的搜索。提取和比较研究特征和结果。

结果

总之，本综述纳入了 20 项研究。大多数研究调查了每位患者的费用，总费用在 9741 欧元到 114,605 欧元之间。六项研究证实，随着疾病进展，费用会增加，在接近患者死亡时达到峰值。肌萎缩侧索硬化的国家成本在 1.49 亿欧元到 13.29 亿欧元之间。

结论

大多数这些研究表明肌萎缩侧索硬化的经济负担相当大。然而，考虑到疾病的严重程度，还需要进一步的研究来制定具有成本效益的卫生政策。