Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain
Social economic costs and health-related quality of life in patients with amyotrophic lateral sclerosis in Spain
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DOI：
10.1080/17482960802430781
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发表时间：
2009-01-01
影响因子：
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通讯作者：
Luis Alfonso-Sanchez, Jose
中科院分区：
文献类型：
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作者：
Lopez-Bastida, Julio;Perestelo-Perez, Lilisbeth;Luis Alfonso-Sanchez, Jose
肌萎缩侧索硬化症（ALS）是一种在相对较短的时间内导致个体功能残疾的过程，对自主性有非常重要的限制并影响生活质量。我们希望确定西班牙 ALS 患者的经济负担（直接和间接成本）以及与健康相关的生活质量 (HRQoL)。 2004 年对 63 名 ALS 患者进行了一项横断面研究。通过患者和/或患者护理人员填写的调查问卷对资源的使用情况进行了回顾性评估。使用的方法是基于社会视角的疾病成本研究。我们使用 EQ-5D 评估了 HRQoL。每名 ALS 患者的平均年费用为（原文如此）36,194。最重要的费用类别是非正式护理、提前退休、药物和矫形设备。平均 EQ-5D 指数得分为 0.18，平均 EQ-5D VAS 得分为 29。西班牙卫生当局应优先考虑与应对患者残疾的护理相关的成本，以及 ALS 患者提前退休造成的高昂间接成本。患者的 HRQoL 非常低，并且很大程度上受到 ALS 严重程度的影响。
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 (sic)36,194. 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.