Social economic costs and health‐related quality of life in patients with degenerative cerebellar ataxia in Spain
Identifieur interne : 003208 ( Main/Merge ); précédent : 003207; suivant : 003209Social economic costs and health‐related quality of life in patients with degenerative cerebellar ataxia in Spain
Auteurs : Julio L Pez-Bastida [Espagne] ; Lilisbeth Perestelo-Pérez [Espagne] ; Fernando Mont N-Álvarez [Espagne] ; Pedro Serrano-Aguilar [Espagne]Source :
- Movement Disorders [ 0885-3185 ] ; 2008-01-30.
Descripteurs français
- Wicri :
- geographic : Espagne.
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, Spain (epidemiology), cerebellar ataxia, cost of illness, quality of life.
- 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. 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
Url:
DOI: 10.1002/mds.21798
Links toward previous steps (curation, corpus...)
- to stream Istex, to step Corpus: 001343
- to stream Istex, to step Curation: 001343
- to stream Istex, to step Checkpoint: 001186
- to stream PubMed, to step Corpus: 002446
- to stream PubMed, to step Curation: 002446
- to stream PubMed, to step Checkpoint: 002085
- to stream Ncbi, to step Merge: 001F13
- to stream Ncbi, to step Curation: 001F13
- to stream Ncbi, to step Checkpoint: 001F13
Links to Exploration step
ISTEX:2000D820549B51B25A9172FF80725EDEBA7FE563Le document en format XML
<record><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><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 Astida, Julio" sort="L Pez Astida, Julio" uniqKey="L Pez Astida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
</author>
<author><name sortKey="Perestelo Erez, Lilisbeth" sort="Perestelo Erez, Lilisbeth" uniqKey="Perestelo Erez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
</author>
<author><name sortKey="Mont N Varez, Fernando" sort="Mont N Varez, Fernando" uniqKey="Mont N Varez F" first="Fernando" last="Mont N-Álvarez">Fernando Mont N-Álvarez</name>
</author>
<author><name sortKey="Serrano Guilar, Pedro" sort="Serrano Guilar, Pedro" uniqKey="Serrano Guilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
</author>
</titleStmt>
<publicationStmt><idno type="wicri:source">ISTEX</idno>
<idno type="RBID">ISTEX:2000D820549B51B25A9172FF80725EDEBA7FE563</idno>
<date when="2008" year="2008">2008</date>
<idno type="doi">10.1002/mds.21798</idno>
<idno type="url">https://api.istex.fr/document/2000D820549B51B25A9172FF80725EDEBA7FE563/fulltext/pdf</idno>
<idno type="wicri:Area/Istex/Corpus">001343</idno>
<idno type="wicri:Area/Istex/Curation">001343</idno>
<idno type="wicri:Area/Istex/Checkpoint">001186</idno>
<idno type="wicri:doubleKey">0885-3185:2008:L Pez Astida J:social:economic:costs</idno>
<idno type="wicri:source">PubMed</idno>
<idno type="RBID">pubmed:17999424</idno>
<idno type="wicri:Area/PubMed/Corpus">002446</idno>
<idno type="wicri:Area/PubMed/Curation">002446</idno>
<idno type="wicri:Area/PubMed/Checkpoint">002085</idno>
<idno type="wicri:Area/Ncbi/Merge">001F13</idno>
<idno type="wicri:Area/Ncbi/Curation">001F13</idno>
<idno type="wicri:Area/Ncbi/Checkpoint">001F13</idno>
<idno type="wicri:Area/Main/Merge">003208</idno>
</publicationStmt>
<sourceDesc><biblStruct><analytic><title level="a" type="main" 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 Astida, Julio" sort="L Pez Astida, Julio" uniqKey="L Pez Astida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service</wicri:regionArea>
<wicri:noRegion>Canary Islands Health Service</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Perestelo Erez, Lilisbeth" sort="Perestelo Erez, Lilisbeth" uniqKey="Perestelo Erez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
</author>
<author><name sortKey="Mont N Varez, Fernando" sort="Mont N Varez, Fernando" uniqKey="Mont N Varez F" first="Fernando" last="Mont N-Álvarez">Fernando Mont N-Álvarez</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Neurology Service, University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service</wicri:regionArea>
<wicri:noRegion>Canary Islands Health Service</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Serrano Guilar, Pedro" sort="Serrano Guilar, Pedro" uniqKey="Serrano Guilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
</author>
</analytic>
<monogr></monogr>
<series><title level="j">Movement Disorders</title>
<title level="j" type="abbrev">Mov. Disord.</title>
<idno type="ISSN">0885-3185</idno>
<idno type="eISSN">1531-8257</idno>
<imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher>
<pubPlace>Hoboken</pubPlace>
<date type="published" when="2008-01-30">2008-01-30</date>
<biblScope unit="vol">23</biblScope>
<biblScope unit="issue">2</biblScope>
<biblScope unit="page" from="212">212</biblScope>
<biblScope unit="page" to="217">217</biblScope>
</imprint>
<idno type="ISSN">0885-3185</idno>
</series>
<idno type="istex">2000D820549B51B25A9172FF80725EDEBA7FE563</idno>
<idno type="DOI">10.1002/mds.21798</idno>
<idno type="ArticleID">MDS21798</idno>
</biblStruct>
</sourceDesc>
<seriesStmt><idno type="ISSN">0885-3185</idno>
</seriesStmt>
</fileDesc>
<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term>
<term>Adult</term>
<term>Aged</term>
<term>Cerebellar Ataxia (economics)</term>
<term>Cerebellar Ataxia (epidemiology)</term>
<term>Cerebellar Ataxia (psychology)</term>
<term>Child</term>
<term>Child, Preschool</term>
<term>Cost of Illness</term>
<term>Female</term>
<term>Health Status</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Quality of Life</term>
<term>Questionnaires</term>
<term>Retrospective Studies</term>
<term>Severity of Illness Index</term>
<term>Sickness Impact Profile</term>
<term>Spain</term>
<term>Spain (epidemiology)</term>
<term>cerebellar ataxia</term>
<term>cost of illness</term>
<term>quality of life</term>
</keywords>
<keywords scheme="MESH" type="geographic" qualifier="epidemiology" xml:lang="en"><term>Spain</term>
</keywords>
<keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Espagne</term>
</keywords>
<keywords scheme="MESH" qualifier="economics" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" xml:lang="en"><term>Adolescent</term>
<term>Adult</term>
<term>Aged</term>
<term>Child</term>
<term>Child, Preschool</term>
<term>Cost of Illness</term>
<term>Female</term>
<term>Health Status</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Quality of Life</term>
<term>Questionnaires</term>
<term>Retrospective Studies</term>
<term>Severity of Illness Index</term>
<term>Sickness Impact Profile</term>
</keywords>
</textClass>
<langUsage><language ident="en">en</language>
</langUsage>
</profileDesc>
</teiHeader>
<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. 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</div>
</front>
</TEI>
<double doi="10.1002/mds.21798"><ISTEX><TEI wicri:istexFullTextTei="biblStruct"><teiHeader><fileDesc><titleStmt><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 Astida, Julio" sort="L Pez Astida, Julio" uniqKey="L Pez Astida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
</author>
<author><name sortKey="Perestelo Erez, Lilisbeth" sort="Perestelo Erez, Lilisbeth" uniqKey="Perestelo Erez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
</author>
<author><name sortKey="Mont N Varez, Fernando" sort="Mont N Varez, Fernando" uniqKey="Mont N Varez F" first="Fernando" last="Mont N-Álvarez">Fernando Mont N-Álvarez</name>
</author>
<author><name sortKey="Serrano Guilar, Pedro" sort="Serrano Guilar, Pedro" uniqKey="Serrano Guilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
</author>
</titleStmt>
<publicationStmt><idno type="wicri:source">ISTEX</idno>
<idno type="RBID">ISTEX:2000D820549B51B25A9172FF80725EDEBA7FE563</idno>
<date when="2008" year="2008">2008</date>
<idno type="doi">10.1002/mds.21798</idno>
<idno type="url">https://api.istex.fr/document/2000D820549B51B25A9172FF80725EDEBA7FE563/fulltext/pdf</idno>
<idno type="wicri:Area/Istex/Corpus">001343</idno>
<idno type="wicri:Area/Istex/Curation">001343</idno>
<idno type="wicri:Area/Istex/Checkpoint">001186</idno>
<idno type="wicri:doubleKey">0885-3185:2008:L Pez Astida J:social:economic:costs</idno>
</publicationStmt>
<sourceDesc><biblStruct><analytic><title level="a" type="main" 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 Astida, Julio" sort="L Pez Astida, Julio" uniqKey="L Pez Astida J" first="Julio" last="L Pez-Bastida">Julio L Pez-Bastida</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service</wicri:regionArea>
<wicri:noRegion>Canary Islands Health Service</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Perestelo Erez, Lilisbeth" sort="Perestelo Erez, Lilisbeth" uniqKey="Perestelo Erez L" first="Lilisbeth" last="Perestelo-Pérez">Lilisbeth Perestelo-Pérez</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
</author>
<author><name sortKey="Mont N Varez, Fernando" sort="Mont N Varez, Fernando" uniqKey="Mont N Varez F" first="Fernando" last="Mont N-Álvarez">Fernando Mont N-Álvarez</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Neurology Service, University Hospital Nuestra Señora de la Candelaria, Canary Islands Health Service</wicri:regionArea>
<wicri:noRegion>Canary Islands Health Service</wicri:noRegion>
</affiliation>
</author>
<author><name sortKey="Serrano Guilar, Pedro" sort="Serrano Guilar, Pedro" uniqKey="Serrano Guilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
<affiliation wicri:level="1"><country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service. Canary Islands Health Service</wicri:regionArea>
</affiliation>
</author>
</analytic>
<monogr></monogr>
<series><title level="j">Movement Disorders</title>
<title level="j" type="abbrev">Mov. Disord.</title>
<idno type="ISSN">0885-3185</idno>
<idno type="eISSN">1531-8257</idno>
<imprint><publisher>Wiley Subscription Services, Inc., A Wiley Company</publisher>
<pubPlace>Hoboken</pubPlace>
<date type="published" when="2008-01-30">2008-01-30</date>
<biblScope unit="vol">23</biblScope>
<biblScope unit="issue">2</biblScope>
<biblScope unit="page" from="212">212</biblScope>
<biblScope unit="page" to="217">217</biblScope>
</imprint>
<idno type="ISSN">0885-3185</idno>
</series>
<idno type="istex">2000D820549B51B25A9172FF80725EDEBA7FE563</idno>
<idno type="DOI">10.1002/mds.21798</idno>
<idno type="ArticleID">MDS21798</idno>
</biblStruct>
</sourceDesc>
<seriesStmt><idno type="ISSN">0885-3185</idno>
</seriesStmt>
</fileDesc>
<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Spain</term>
<term>cerebellar ataxia</term>
<term>cost of illness</term>
<term>quality of life</term>
</keywords>
<keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Espagne</term>
</keywords>
</textClass>
<langUsage><language ident="en">en</language>
</langUsage>
</profileDesc>
</teiHeader>
<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. 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</div>
</front>
</TEI>
</ISTEX>
<PubMed><TEI><teiHeader><fileDesc><titleStmt><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>
<affiliation wicri:level="1"><nlm:affiliation>Planning and Evaluation Service, Canary Islands Health Service, Santa Cruz de Tenerife, Canary Islands, Spain. jlopbas@gobiernodecanarias.org</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service, Canary Islands Health Service, Santa Cruz de Tenerife, Canary Islands</wicri:regionArea>
<wicri:noRegion>Canary Islands</wicri:noRegion>
</affiliation>
</author>
<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>
</author>
<author><name sortKey="Serrano Aguilar, Pedro" sort="Serrano Aguilar, Pedro" uniqKey="Serrano Aguilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
</author>
</titleStmt>
<publicationStmt><idno type="wicri:source">PubMed</idno>
<date when="2008">2008</date>
<idno type="doi">10.1002/mds.21798</idno>
<idno type="RBID">pubmed:17999424</idno>
<idno type="pmid">17999424</idno>
<idno type="wicri:Area/PubMed/Corpus">002446</idno>
<idno type="wicri:Area/PubMed/Curation">002446</idno>
<idno type="wicri:Area/PubMed/Checkpoint">002085</idno>
<idno type="wicri:Area/Ncbi/Merge">001F13</idno>
<idno type="wicri:Area/Ncbi/Curation">001F13</idno>
<idno type="wicri:Area/Ncbi/Checkpoint">001F13</idno>
</publicationStmt>
<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>
<affiliation wicri:level="1"><nlm:affiliation>Planning and Evaluation Service, Canary Islands Health Service, Santa Cruz de Tenerife, Canary Islands, Spain. jlopbas@gobiernodecanarias.org</nlm:affiliation>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Planning and Evaluation Service, Canary Islands Health Service, Santa Cruz de Tenerife, Canary Islands</wicri:regionArea>
<wicri:noRegion>Canary Islands</wicri:noRegion>
</affiliation>
</author>
<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>
</author>
<author><name sortKey="Serrano Aguilar, Pedro" sort="Serrano Aguilar, Pedro" uniqKey="Serrano Aguilar P" first="Pedro" last="Serrano-Aguilar">Pedro Serrano-Aguilar</name>
</author>
</analytic>
<series><title level="j">Movement disorders : official journal of the Movement Disorder Society</title>
<idno type="eISSN">1531-8257</idno>
<imprint><date when="2008" type="published">2008</date>
</imprint>
</series>
</biblStruct>
</sourceDesc>
</fileDesc>
<profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Adolescent</term>
<term>Adult</term>
<term>Aged</term>
<term>Cerebellar Ataxia (economics)</term>
<term>Cerebellar Ataxia (epidemiology)</term>
<term>Cerebellar Ataxia (psychology)</term>
<term>Child</term>
<term>Child, Preschool</term>
<term>Cost of Illness</term>
<term>Female</term>
<term>Health Status</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Quality of Life</term>
<term>Questionnaires</term>
<term>Retrospective Studies</term>
<term>Severity of Illness Index</term>
<term>Sickness Impact Profile</term>
<term>Spain (epidemiology)</term>
</keywords>
<keywords scheme="MESH" type="geographic" qualifier="epidemiology" xml:lang="en"><term>Spain</term>
</keywords>
<keywords scheme="MESH" qualifier="economics" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" qualifier="epidemiology" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en"><term>Cerebellar Ataxia</term>
</keywords>
<keywords scheme="MESH" xml:lang="en"><term>Adolescent</term>
<term>Adult</term>
<term>Aged</term>
<term>Child</term>
<term>Child, Preschool</term>
<term>Cost of Illness</term>
<term>Female</term>
<term>Health Status</term>
<term>Humans</term>
<term>Male</term>
<term>Middle Aged</term>
<term>Quality of Life</term>
<term>Questionnaires</term>
<term>Retrospective Studies</term>
<term>Severity of Illness Index</term>
<term>Sickness Impact Profile</term>
</keywords>
<keywords scheme="Wicri" type="geographic" xml:lang="fr"><term>Espagne</term>
</keywords>
</textClass>
</profileDesc>
</teiHeader>
<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>
</front>
</TEI>
</PubMed>
</double>
</record>
Pour manipuler ce document sous Unix (Dilib)
EXPLOR_STEP=$WICRI_ROOT/Wicri/Santé/explor/MovDisordV3/Data/Main/Merge
HfdSelect -h $EXPLOR_STEP/biblio.hfd -nk 003208 | SxmlIndent | more
Ou
HfdSelect -h $EXPLOR_AREA/Data/Main/Merge/biblio.hfd -nk 003208 | SxmlIndent | more
Pour mettre un lien sur cette page dans le réseau Wicri
{{Explor lien |wiki= Wicri/Santé |area= MovDisordV3 |flux= Main |étape= Merge |type= RBID |clé= ISTEX:2000D820549B51B25A9172FF80725EDEBA7FE563 |texte= Social economic costs and health‐related quality of life in patients with degenerative cerebellar ataxia in Spain }}
![]() | This area was generated with Dilib version V0.6.23. | ![]() |