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.

Amyotrophic lateral sclerosis: improving care with a multidisciplinary approach

“…Higher health and social care costs were associated with the use of non-invasive ventilation and gastrostomy and with shorter survival. Depending on the health care system in question, out-of-pocket expenses can also be substantial in ALS care 60,61…”

Profile of medical care costs in patients with amyotrophic lateral sclerosis in the Medicare programme and under commercial insurance

“…For example, in Denmark, Jennum et al (14) also found costs were highest in the index month, sharply rising during the months before diagnosis. Other ex-U.S. studies have found ALS costs increase with disease severity (4)(5)(6)(7)(8) and have connected rising costs to characteristics of disease progression such as wheelchairs and ventilators (4,5,8). However, the actual costs associated with ALS and when or how they are distributed across disease progression vary, indicating that the cost of ALS is multifactorial and likely to be dependent on country-specific healthcare policies.…”

“…substantial out-of-pocket expenses) on ALS patients (12). Moreover, cost and ALS disease severity relationships have been studied in Spain (5), the Netherlands (8), the United Kingdom (6), Denmark (14) and Korea (7), and most found that costs increased with disease severity across the course of the disease.…”

“…No cure exists and the only drug shown to increase survival does so modestly (2). ALS management is primarily supportive (3), increasing with time and requiring greater assistance and intervention leading to escalating cost burden (4)(5)(6)(7)(8). Despite this burden, little has been published on costs associated with disease progression in patients with ALS (9).…”

Comparison of the King’s and MiToS staging systems for ALS

“…Various ALS staging methods have been proposed, with uses such as a tool for rehabilitation (3), rapid functional assessment (4), comparison of different treatment models (5,6), biomarker analysis (7) and health economics (8). The El Escorial criteria (9) provide a set of diagnostic guidelines that are based on patterns of disease spread but are not in themselves a staging system.…”