Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain

Abstract

Amyotrophic lateral sclerosis (ALS) is a process that leads to the functional disability of the individual in a relatively short period of time, with a very important limitation of autonomy and affecting the quality of life. We wished to determine the economic burden (direct and indirect costs), as well as health-related quality of life (HRQoL) in patients with ALS in Spain. A cross-sectional study was carried out on 63 patients with ALS during 2004. A retrospective assessment of the use of resources was obtained through questionnaires completed by the patients and/or the patients' caregivers. The approach used was a cost-of-illness study based on a societal perspective. We assessed the HRQoL with the EQ-5D. Mean annual cost per patient with ALS was euro36,194. The most important categories of costs were informal care, early retirement, medications, and orthopaedic devices. The mean EQ-5D index score was 0.18 and the mean EQ-5D VAS score was 29. Considerations of the costs related to caregiving to cope with the patients' disabilities, as well as the high indirect costs resulting from early retirement in patients with ALS, should become a priority for health authorities in Spain. The patients' HRQoL was very low and substantially influenced by the degree of severity of ALS.

Networking Across Borders for Individuals with Organic Acidurias and Urea Cycle Disorders: The E-IMD Consortium

“…Fragmented disease knowledge means that care is not optimal, and there are significant differences in the infrastructure, expertise, diagnostic procedures, time to diagnosis, strategies and outcome. In analogy to other rare diseases it can be expected that this diversity has a negative impact on health outcome and on socio-economics (Brimley et al 2013;Linertov a et al 2012;López-Bastida et al 2008;López-Bastida et al 2009). …”

Social/economic costs and health-related quality of life in patients with rare diseases in Europe

“…Although some countryspecific research on a limited set of rare diseases has been done on HRQOL and cost-of-illness [8][9][10][11][12], cross-national research on the socio-economic impact of rare diseases is still lacking in the EU.…”

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.…”

“…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).…”