Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain.
Identifieur interne : 002446 ( PubMed/Corpus ); précédent : 002445; suivant : 002447Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain.
Auteurs : Julio L Pez-Bastida ; Lilisbeth Perestelo-Pérez ; Fernando Mont N-Alvarez ; Pedro Serrano-AguilarSource :
- Movement disorders : official journal of the Movement Disorder Society [ 1531-8257 ] ; 2008.
English descriptors
- KwdEn :
- Adolescent, Adult, Aged, Cerebellar Ataxia (economics), Cerebellar Ataxia (epidemiology), Cerebellar Ataxia (psychology), Child, Child, Preschool, Cost of Illness, Female, Health Status, Humans, Male, Middle Aged, Quality of Life, Questionnaires, Retrospective Studies, Severity of Illness Index, Sickness Impact Profile, Spain (epidemiology).
- MESH :
- geographic , epidemiology : Spain.
- economics : Cerebellar Ataxia.
- epidemiology : Cerebellar Ataxia.
- psychology : Cerebellar Ataxia.
- Adolescent, Adult, Aged, Child, Child, Preschool, Cost of Illness, Female, Health Status, Humans, Male, Middle Aged, Quality of Life, Questionnaires, Retrospective Studies, Severity of Illness Index, Sickness Impact Profile.
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 euros. 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.
DOI: 10.1002/mds.21798
PubMed: 17999424
Links to Exploration step
pubmed:17999424Le document en format XML
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<author><name sortKey="L Pez Bastida, Julio" sort="L Pez Bastida, Julio" uniqKey="L Pez Bastida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
<affiliation><nlm:affiliation>Planning and Evaluation Service, Canary Islands Health Service, Santa Cruz de Tenerife, Canary Islands, Spain. jlopbas@gobiernodecanarias.org</nlm:affiliation>
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<author><name sortKey="Perestelo Perez, Lilisbeth" sort="Perestelo Perez, Lilisbeth" uniqKey="Perestelo Perez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
</author>
<author><name sortKey="Mont N Alvarez, Fernando" sort="Mont N Alvarez, Fernando" uniqKey="Mont N Alvarez F" first="Fernando" last="Mont N-Alvarez">Fernando Mont N-Alvarez</name>
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<author><name sortKey="Serrano Aguilar, Pedro" sort="Serrano Aguilar, Pedro" uniqKey="Serrano Aguilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
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<sourceDesc><biblStruct><analytic><title xml:lang="en">Social economic costs and health-related quality of life in patients with degenerative cerebellar ataxia in Spain.</title>
<author><name sortKey="L Pez Bastida, Julio" sort="L Pez Bastida, Julio" uniqKey="L Pez Bastida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
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<author><name sortKey="Perestelo Perez, Lilisbeth" sort="Perestelo Perez, Lilisbeth" uniqKey="Perestelo Perez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
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<author><name sortKey="Mont N Alvarez, Fernando" sort="Mont N Alvarez, Fernando" uniqKey="Mont N Alvarez F" first="Fernando" last="Mont N-Alvarez">Fernando Mont N-Alvarez</name>
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<author><name sortKey="Serrano Aguilar, Pedro" sort="Serrano Aguilar, Pedro" uniqKey="Serrano Aguilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
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<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term>
<term>Adult</term>
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<keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Cerebellar Ataxia</term>
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<front><div type="abstract" xml:lang="en">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 euros. 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.</div>
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<Abstract><AbstractText>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 euros. 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.</AbstractText>
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