Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain

Authors

  • Julio López-Bastida PhD,

    Corresponding author
    1. Planning and Evaluation Service. Canary Islands Health Service, Spain
    2. University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service, Spain
    • Servicio de Evaluación y Planificación de la Dirección del Servicio Canario de la Salud. Calle Pérez de Rozas No 5, Planta 4a, 38004 Santa Cruz de Tenerife, Canary Islands, Spain

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  • Lilisbeth Perestelo-Pérez MPsych,

    1. Planning and Evaluation Service. Canary Islands Health Service, Spain
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  • Fernando Montón-álvarez PhD,

    1. Neurology Service, University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service, Spain
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  • Pedro Serrano-Aguilar PhD

    1. Planning and Evaluation Service. Canary Islands Health Service, Spain
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Abstract

To determine the economic burden (direct and indirect costs), as well as health-related quality of life (HRQOL) in patients diagnosed with spinocerebellar ataxia (SCA) in Spain. A cross-sectional study was carried out on 84 patients with SCA from the Spanish Ataxia Federation (FEDAES) during 2004. A retrospective assessment of the use of resources was obtained through questionnaires filled out by the patients or the patient's caregivers. The approach used was the cost-of-illness study based on a societal perspective. To assess HRQOL in patients with SCA, they were asked to fill out the EQ-5D generic questionnaire. The mean annual cost per patient with SCA was €18,776. The most important categories of costs were informal care, early retirement (permanent disability), medications, and orthopaedic devises. The mean EQ-5D index score was 0.48 (0.38 for high and 0.58 for low severity patients) and the mean EQ-5D VAS score was 48 (43 for high and 52 for low severity patients). Considerations of the costs related to caregivers due to the patients' disabilities, as well as the high indirect costs resulting from permanent disabilities in patients with SCA, should become a priority for health authorities. Furthermore, the patients' quality of life, as determined by the EQ-5D questionnaire, was very low and substantially influenced by the degree of severity of SCA. © 2007 Movement Disorder Society

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