Socioeconomic costs of amyotrophic lateral sclerosis according to staging system

Abstract

The objective of this study was to compare the cost of illness of amyotrophic lateral sclerosis (ALS) in the Korean population based on the staging system for ALS from the perspective of both patients and the government. Direct medical costs, care-related costs, and loss of productivity in patients with ALS were measured based on medical records and face-to-face interviews. The patients were divided into groups according to the staging system for ALS, and the cost of illness was analysed. A total of 151 patients with ALS were enrolled in the study. The mean monthly cost of ALS was US $7902 per patient and increased according to the disease stage (stage 2, US $5181; stage 3, US $7089; stage 4, US $10,557). Of direct medical costs (US $3436), 44.8% of the cost burden was carried by patients, and the remaining costs were paid by the government. In conclusion, although the current coverage rate of the National Health Insurance (NHI) system for rare and intractable diseases including ALS is 90%, the rate of direct medical costs paid by patients and out-of-pocket costs remain high. Moreover, coverage rates and cost of illness are closely related with disease severity.

Key words::

• Amyotrophic lateral sclerosis
• cost of illness
• economic burden
• staging system

Acknowledgements

The authors are grateful for the assistance of the patients and caregivers in this study. The study was supported by a grant of the Korean Health Technology R&D Project, Ministry for Health & Welfare, Republic of Korea (A101712 & A120182).

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.