Self-Rated Health Status in Spinocerebellar Ataxia-Results from a European Multiceriter Study
Identifieur interne : 000227 ( France/Analysis ); précédent : 000226; suivant : 000228Self-Rated Health Status in Spinocerebellar Ataxia-Results from a European Multiceriter Study
Auteurs : Tanja Schmitz-Hübsch [Allemagne] ; Mathieu Coudert [France] ; Paola Giunti [Royaume-Uni] ; Christoph Globas [Allemagne] ; Laszlo Baliko [Hongrie] ; Roberto Fancellu [Italie] ; Caterina Mariotti [Italie] ; Alessandro Filla [Italie] ; Maryla Rakowicz [Pologne] ; Perrine Charles [France] ; Pascale Ribai [France] ; Sandra Szymanski [Allemagne] ; Jon Infante [Espagne] ; Bart P. C. Van De Warrenburg [Pays-Bas] ; Alexandra Dürr [France] ; Dagmar Timmann [Allemagne] ; Sylvia Boesch [Autriche] ; Rafal Rola [Pologne] ; Chantal Depondt [Belgique] ; Ludger Schöls [Allemagne] ; Elszbieta Zdzienicka [Pologne] ; Jun-Suk Kang [Allemagne] ; Susanne Ratzka [Allemagne] ; Berry Kremer [Pays-Bas] ; Jörg B. Schulz [Allemagne] ; Thomas Klopstock [Allemagne] ; Bela Melegh [Hongrie] ; Sophie Tezenas Du Montcel [France] ; Thomas Klockgether [Allemagne]Source :
- Movement disorders [ 0885-3185 ] ; 2010.
Descripteurs français
- Pascal (Inist)
English descriptors
Abstract
Patient-based measures of subjective health status are increasingly used as outcome measures in interventional trials. We aimed to determine the variability and predictors of subjective health ratings in a possible target group for future interventions: the spinocerebellar ataxias (SCAs). A consecutive sample of 526 patients with otherwise unexplained progressive ataxia and genetic diagnoses of SCA1 (117), SCA2 (163), SCA3 (139), and SCA6 (107) were enrolled at 18 European referral centers. Subjective health status was assessed with a generic measure of health related quality of life, the EQ-5D (Euroqol) questionnaire. In addition, we performed a neurological examination and a screening questionnaire for affective disorders (patient health questionnaire). Patient-reported health status was compromised in patients of all genotypes (EQ-5D visual analogue scale (EQ-VAS) mean 61.45 ± 20.8). Specifically, problems were reported in the dimensions of mobility (86.9% of patients), usual activities (68%), pain/discomfort (49.4%), depression/ anxiety (46.4%), and self care (38.2%). Multivariate analysis revealed three independent predictors of subjective health status: ataxia severity, extent of noncerebellar involvement, and the presence of depressive syndrome. This model explained 30.5% of EQ-VAS variance in the whole sample and might be extrapolated to other SCA genotypes.
Affiliations:
- Allemagne, Autriche, Belgique, Espagne, France, Hongrie, Italie, Pays-Bas, Pologne, Royaume-Uni
- Angleterre, Bade-Wurtemberg, Basse-Saxe, Bavière, District de Cologne, District de Haute-Bavière, District de Tübingen, Grand Londres, Lombardie, Rhénanie-du-Nord-Westphalie, Région de Bruxelles-Capitale
- Aix-la-Chapelle, Bonn, Bruxelles, Göttingen, Londres, Milan, Munich, Paris, Tübingen
- Université libre de Bruxelles
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Pascal:10-0233210Le document en format XML
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aut.</sZ></inist:fA14><country>Autriche</country><wicri:noRegion>Innsbruck</wicri:noRegion></affiliation></author><author><name sortKey="Rola, Rafal" sort="Rola, Rafal" uniqKey="Rola R" first="Rafal" last="Rola">Rafal Rola</name><affiliation wicri:level="1"><inist:fA14 i1="17"><s1>First Department of Neurology, Institute of Psychiatry and Neurology</s1><s2>Warsaw</s2><s3>POL</s3><sZ>18 aut.</sZ></inist:fA14><country>Pologne</country><wicri:noRegion>Warsaw</wicri:noRegion></affiliation></author><author><name sortKey="Depondt, Chantal" sort="Depondt, Chantal" uniqKey="Depondt C" first="Chantal" last="Depondt">Chantal Depondt</name><affiliation wicri:level="4"><inist:fA14 i1="18"><s1>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles</s1><s2>Brussels</s2><s3>BEL</s3><sZ>19 aut.</sZ></inist:fA14><country>Belgique</country><placeName><settlement type="city">Bruxelles</settlement><region nuts="2">Région de Bruxelles-Capitale</region></placeName><orgName type="university">Université libre de Bruxelles</orgName></affiliation></author><author><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><affiliation wicri:level="3"><inist:fA14 i1="05"><s1>Department of Neurology and Hertie-Institute for Clinical Brain Research, University of Tübingen</s1><s2>Tübingen</s2><s3>DEU</s3><sZ>4 aut.</sZ><sZ>20 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Bade-Wurtemberg</region><region type="district" nuts="2">District de Tübingen</region><settlement type="city">Tübingen</settlement></placeName></affiliation></author><author><name sortKey="Zdzienicka, Elszbieta" sort="Zdzienicka, Elszbieta" uniqKey="Zdzienicka E" first="Elszbieta" last="Zdzienicka">Elszbieta Zdzienicka</name><affiliation wicri:level="1"><inist:fA14 i1="19"><s1>Department of Genetics, Institute of Psychiatry and Neurology</s1><s2>Warsaw</s2><s3>POL</s3><sZ>21 aut.</sZ></inist:fA14><country>Pologne</country><wicri:noRegion>Warsaw</wicri:noRegion></affiliation></author><author><name sortKey="Kang, Jun Suk" sort="Kang, Jun Suk" uniqKey="Kang J" first="Jun-Suk" last="Kang">Jun-Suk Kang</name><affiliation wicri:level="1"><inist:fA14 i1="20"><s1>Department of Neurology, University of Frankfurt</s1><s2>Frankfurt/M</s2><s3>DEU</s3><sZ>22 aut.</sZ></inist:fA14><country>Allemagne</country><wicri:noRegion>Frankfurt/M</wicri:noRegion><wicri:noRegion>University of Frankfurt</wicri:noRegion><wicri:noRegion>Frankfurt/M</wicri:noRegion></affiliation></author><author><name sortKey="Ratzka, Susanne" sort="Ratzka, Susanne" uniqKey="Ratzka S" first="Susanne" last="Ratzka">Susanne Ratzka</name><affiliation wicri:level="3"><inist:fA14 i1="21"><s1>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen</s1><s2>Göttingen</s2><s3>DEU</s3><sZ>23 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="2">Basse-Saxe</region><settlement type="city">Göttingen</settlement></placeName></affiliation></author><author><name sortKey="Kremer, Berry" sort="Kremer, Berry" uniqKey="Kremer B" first="Berry" last="Kremer">Berry Kremer</name><affiliation wicri:level="1"><inist:fA14 i1="14"><s1>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center</s1><s2>Nijnaegen</s2><s3>NLD</s3><sZ>14 aut.</sZ><sZ>24 aut.</sZ></inist:fA14><country>Pays-Bas</country><wicri:noRegion>Nijnaegen</wicri:noRegion></affiliation></author><author><name sortKey="Schulz, Jorg B" sort="Schulz, Jorg B" uniqKey="Schulz J" first="Jörg B." last="Schulz">Jörg B. Schulz</name><affiliation wicri:level="3"><inist:fA14 i1="22"><s1>Department of Neurology, RWTH Aachen, University Medical Hospital</s1><s2>Aachen</s2><s3>DEU</s3><sZ>25 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Rhénanie-du-Nord-Westphalie</region><region type="district" nuts="2">District de Cologne</region><settlement type="city">Aix-la-Chapelle</settlement></placeName></affiliation></author><author><name sortKey="Klopstock, Thomas" sort="Klopstock, Thomas" uniqKey="Klopstock T" first="Thomas" last="Klopstock">Thomas Klopstock</name><affiliation wicri:level="3"><inist:fA14 i1="23"><s1>Department of Neurology, Friedrich-Baur-Institute, University Hospital of Ludwig-Maximilians-University</s1><s2>München</s2><s3>DEU</s3><sZ>26 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Bavière</region><region type="district" nuts="2">District de Haute-Bavière</region><settlement type="city">Munich</settlement></placeName></affiliation></author><author><name sortKey="Melegh, Bela" sort="Melegh, Bela" uniqKey="Melegh B" first="Bela" last="Melegh">Bela Melegh</name><affiliation wicri:level="1"><inist:fA14 i1="24"><s1>Department of Medical Genetics and Child Development, University of Pécs</s1><s2>Pécs</s2><s3>HUN</s3><sZ>27 aut.</sZ></inist:fA14><country>Hongrie</country><wicri:noRegion>Pécs</wicri:noRegion></affiliation></author><author><name sortKey="Tezenas Du Montcel, Sophie" sort="Tezenas Du Montcel, Sophie" uniqKey="Tezenas Du Montcel S" first="Sophie" last="Tezenas Du Montcel">Sophie Tezenas Du Montcel</name><affiliation wicri:level="1"><inist:fA14 i1="02"><s1>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié-Salpêtrière, Assistance Publique-Hôpitaux</s1><s2>Paris</s2><s3>FRA</s3><sZ>2 aut.</sZ><sZ>28 aut.</sZ></inist:fA14><country>France</country><placeName><settlement 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type="wicri:source">INIST</idno><idno type="inist">10-0233210</idno><date when="2010">2010</date><idno type="stanalyst">PASCAL 10-0233210 INIST</idno><idno type="RBID">Pascal:10-0233210</idno><idno type="wicri:Area/PascalFrancis/Corpus">000B45</idno><idno type="wicri:Area/PascalFrancis/Curation">002174</idno><idno type="wicri:Area/PascalFrancis/Checkpoint">000845</idno><idno type="wicri:doubleKey">0885-3185:2010:Schmitz Hubsch T:self:rated:health</idno><idno type="wicri:Area/Main/Merge">002432</idno><idno type="wicri:Area/Main/Curation">001F14</idno><idno type="wicri:Area/Main/Exploration">001F14</idno><idno type="wicri:Area/France/Extraction">000227</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a">Self-Rated Health Status in Spinocerebellar Ataxia-Results from a European Multiceriter Study</title><author><name sortKey="Schmitz Hubsch, Tanja" sort="Schmitz Hubsch, Tanja" uniqKey="Schmitz Hubsch T" first="Tanja" last="Schmitz-Hübsch">Tanja Schmitz-Hübsch</name><affiliation wicri:level="3"><inist:fA14 i1="01"><s1>Department of Neurology, University Hospital of Bonn</s1><s2>Bonn</s2><s3>DEU</s3><sZ>1 aut.</sZ><sZ>29 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Rhénanie-du-Nord-Westphalie</region><region type="district" nuts="2">District de Cologne</region><settlement type="city">Bonn</settlement></placeName></affiliation></author><author><name sortKey="Coudert, Mathieu" sort="Coudert, Mathieu" uniqKey="Coudert M" first="Mathieu" last="Coudert">Mathieu Coudert</name><affiliation wicri:level="1"><inist:fA14 i1="02"><s1>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié-Salpêtrière, Assistance Publique-Hôpitaux</s1><s2>Paris</s2><s3>FRA</s3><sZ>2 aut.</sZ><sZ>28 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="03"><s1>Modeling in Clinical Research, University Pierre et Marie Curie</s1><s2>Paris</s2><s3>FRA</s3><sZ>2 aut.</sZ><sZ>28 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Giunti, Paola" sort="Giunti, Paola" uniqKey="Giunti P" first="Paola" last="Giunti">Paola Giunti</name><affiliation wicri:level="3"><inist:fA14 i1="04"><s1>Department of Molecular Neuroscience, Institute of Neurology, Queen Square</s1><s2>London</s2><s3>GBR</s3><sZ>3 aut.</sZ></inist:fA14><country>Royaume-Uni</country><placeName><settlement type="city">Londres</settlement><region type="country">Angleterre</region><region type="région" nuts="1">Grand Londres</region></placeName></affiliation></author><author><name sortKey="Globas, Christoph" sort="Globas, Christoph" uniqKey="Globas C" first="Christoph" last="Globas">Christoph Globas</name><affiliation wicri:level="3"><inist:fA14 i1="05"><s1>Department of Neurology and Hertie-Institute for Clinical Brain Research, University of Tübingen</s1><s2>Tübingen</s2><s3>DEU</s3><sZ>4 aut.</sZ><sZ>20 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Bade-Wurtemberg</region><region type="district" nuts="2">District de Tübingen</region><settlement type="city">Tübingen</settlement></placeName></affiliation></author><author><name sortKey="Baliko, Laszlo" sort="Baliko, Laszlo" uniqKey="Baliko L" first="Laszlo" last="Baliko">Laszlo Baliko</name><affiliation wicri:level="1"><inist:fA14 i1="06"><s1>Department of Neurology and Stroke, County Hospital</s1><s2>Veszprém</s2><s3>HUN</s3><sZ>5 aut.</sZ></inist:fA14><country>Hongrie</country><wicri:noRegion>Veszprém</wicri:noRegion></affiliation></author><author><name sortKey="Fancellu, Roberto" sort="Fancellu, Roberto" uniqKey="Fancellu R" first="Roberto" last="Fancellu">Roberto Fancellu</name><affiliation wicri:level="3"><inist:fA14 i1="07"><s1>Department of Biochemistry and Genetics, Fondazione-IRCCS, Istituto Neurologico Carlo Besta</s1><s2>Milan</s2><s3>ITA</s3><sZ>6 aut.</sZ><sZ>7 aut.</sZ></inist:fA14><country>Italie</country><placeName><settlement type="city">Milan</settlement><region nuts="2">Lombardie</region></placeName></affiliation></author><author><name sortKey="Mariotti, Caterina" sort="Mariotti, Caterina" uniqKey="Mariotti C" first="Caterina" last="Mariotti">Caterina Mariotti</name><affiliation wicri:level="3"><inist:fA14 i1="07"><s1>Department of Biochemistry and Genetics, Fondazione-IRCCS, Istituto Neurologico Carlo Besta</s1><s2>Milan</s2><s3>ITA</s3><sZ>6 aut.</sZ><sZ>7 aut.</sZ></inist:fA14><country>Italie</country><placeName><settlement type="city">Milan</settlement><region nuts="2">Lombardie</region></placeName></affiliation></author><author><name sortKey="Filla, Alessandro" sort="Filla, Alessandro" uniqKey="Filla A" first="Alessandro" last="Filla">Alessandro Filla</name><affiliation wicri:level="1"><inist:fA14 i1="08"><s1>Department of Neurology, University of Naples</s1><s2>Naples</s2><s3>ITA</s3><sZ>8 aut.</sZ></inist:fA14><country>Italie</country><wicri:noRegion>Naples</wicri:noRegion></affiliation></author><author><name sortKey="Rakowicz, Maryla" sort="Rakowicz, Maryla" uniqKey="Rakowicz M" first="Maryla" last="Rakowicz">Maryla Rakowicz</name><affiliation wicri:level="1"><inist:fA14 i1="09"><s1>Department of Clinical Neurophysiology, Institute of Psychiatry and Neurology</s1><s2>Warsaw</s2><s3>POL</s3><sZ>9 aut.</sZ></inist:fA14><country>Pologne</country><wicri:noRegion>Warsaw</wicri:noRegion></affiliation></author><author><name sortKey="Charles, Perrine" sort="Charles, Perrine" uniqKey="Charles P" first="Perrine" last="Charles">Perrine Charles</name><affiliation wicri:level="1"><inist:fA14 i1="10"><s1>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="11"><s1>AP-HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Ribai, Pascale" sort="Ribai, Pascale" uniqKey="Ribai P" first="Pascale" last="Ribai">Pascale Ribai</name><affiliation wicri:level="1"><inist:fA14 i1="10"><s1>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="11"><s1>AP-HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Szymanski, Sandra" sort="Szymanski, Sandra" uniqKey="Szymanski S" first="Sandra" last="Szymanski">Sandra Szymanski</name><affiliation wicri:level="1"><inist:fA14 i1="12"><s1>Department of Neurology, St. Josef Hospital, University Hospital of Bochum</s1><s2>Bochum</s2><s3>DEU</s3><sZ>12 aut.</sZ></inist:fA14><country>Allemagne</country><wicri:noRegion>Bochum</wicri:noRegion><wicri:noRegion>University Hospital of Bochum</wicri:noRegion><wicri:noRegion>Bochum</wicri:noRegion></affiliation></author><author><name sortKey="Infante, Jon" sort="Infante, Jon" uniqKey="Infante J" first="Jon" last="Infante">Jon Infante</name><affiliation wicri:level="1"><inist:fA14 i1="13"><s1>Department of Neurology, University Hospital "Marqués de Valldecilla," CIBERNED</s1><s2>Santander</s2><s3>ESP</s3><sZ>13 aut.</sZ></inist:fA14><country>Espagne</country><wicri:noRegion>Santander</wicri:noRegion></affiliation></author><author><name sortKey="Van De Warrenburg, Bart P C" sort="Van De Warrenburg, Bart P C" uniqKey="Van De Warrenburg B" first="Bart P. C." last="Van De Warrenburg">Bart P. C. Van De Warrenburg</name><affiliation wicri:level="1"><inist:fA14 i1="14"><s1>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center</s1><s2>Nijnaegen</s2><s3>NLD</s3><sZ>14 aut.</sZ><sZ>24 aut.</sZ></inist:fA14><country>Pays-Bas</country><wicri:noRegion>Nijnaegen</wicri:noRegion></affiliation></author><author><name sortKey="Durr, Alexandra" sort="Durr, Alexandra" uniqKey="Durr A" first="Alexandra" last="Dürr">Alexandra Dürr</name><affiliation wicri:level="1"><inist:fA14 i1="10"><s1>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="11"><s1>AP-HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière</s1><s2>75013, Paris</s2><s3>FRA</s3><sZ>10 aut.</sZ><sZ>11 aut.</sZ><sZ>15 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Timmann, Dagmar" sort="Timmann, Dagmar" uniqKey="Timmann D" first="Dagmar" last="Timmann">Dagmar Timmann</name><affiliation wicri:level="1"><inist:fA14 i1="15"><s1>Department of Neurology, University Hospital of Essen</s1><s2>Essen</s2><s3>DEU</s3><sZ>16 aut.</sZ></inist:fA14><country>Allemagne</country><wicri:noRegion>Essen</wicri:noRegion><wicri:noRegion>University Hospital of Essen</wicri:noRegion><wicri:noRegion>Essen</wicri:noRegion></affiliation></author><author><name sortKey="Boesch, Sylvia" sort="Boesch, Sylvia" uniqKey="Boesch S" first="Sylvia" last="Boesch">Sylvia Boesch</name><affiliation wicri:level="1"><inist:fA14 i1="16"><s1>Department of Neurology, University of Innsbruck</s1><s2>Innsbruck</s2><s3>AUT</s3><sZ>17 aut.</sZ></inist:fA14><country>Autriche</country><wicri:noRegion>Innsbruck</wicri:noRegion></affiliation></author><author><name sortKey="Rola, Rafal" sort="Rola, Rafal" uniqKey="Rola R" first="Rafal" last="Rola">Rafal Rola</name><affiliation wicri:level="1"><inist:fA14 i1="17"><s1>First Department of Neurology, Institute of Psychiatry and Neurology</s1><s2>Warsaw</s2><s3>POL</s3><sZ>18 aut.</sZ></inist:fA14><country>Pologne</country><wicri:noRegion>Warsaw</wicri:noRegion></affiliation></author><author><name sortKey="Depondt, Chantal" sort="Depondt, Chantal" uniqKey="Depondt C" first="Chantal" last="Depondt">Chantal Depondt</name><affiliation wicri:level="4"><inist:fA14 i1="18"><s1>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles</s1><s2>Brussels</s2><s3>BEL</s3><sZ>19 aut.</sZ></inist:fA14><country>Belgique</country><placeName><settlement type="city">Bruxelles</settlement><region nuts="2">Région de Bruxelles-Capitale</region></placeName><orgName type="university">Université libre de Bruxelles</orgName></affiliation></author><author><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><affiliation wicri:level="3"><inist:fA14 i1="05"><s1>Department of Neurology and Hertie-Institute for Clinical Brain Research, University of Tübingen</s1><s2>Tübingen</s2><s3>DEU</s3><sZ>4 aut.</sZ><sZ>20 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Bade-Wurtemberg</region><region type="district" nuts="2">District de Tübingen</region><settlement type="city">Tübingen</settlement></placeName></affiliation></author><author><name sortKey="Zdzienicka, Elszbieta" sort="Zdzienicka, Elszbieta" uniqKey="Zdzienicka E" first="Elszbieta" last="Zdzienicka">Elszbieta Zdzienicka</name><affiliation wicri:level="1"><inist:fA14 i1="19"><s1>Department of Genetics, Institute of Psychiatry and Neurology</s1><s2>Warsaw</s2><s3>POL</s3><sZ>21 aut.</sZ></inist:fA14><country>Pologne</country><wicri:noRegion>Warsaw</wicri:noRegion></affiliation></author><author><name sortKey="Kang, Jun Suk" sort="Kang, Jun Suk" uniqKey="Kang J" first="Jun-Suk" last="Kang">Jun-Suk Kang</name><affiliation wicri:level="1"><inist:fA14 i1="20"><s1>Department of Neurology, University of Frankfurt</s1><s2>Frankfurt/M</s2><s3>DEU</s3><sZ>22 aut.</sZ></inist:fA14><country>Allemagne</country><wicri:noRegion>Frankfurt/M</wicri:noRegion><wicri:noRegion>University of Frankfurt</wicri:noRegion><wicri:noRegion>Frankfurt/M</wicri:noRegion></affiliation></author><author><name sortKey="Ratzka, Susanne" sort="Ratzka, Susanne" uniqKey="Ratzka S" first="Susanne" last="Ratzka">Susanne Ratzka</name><affiliation wicri:level="3"><inist:fA14 i1="21"><s1>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen</s1><s2>Göttingen</s2><s3>DEU</s3><sZ>23 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="2">Basse-Saxe</region><settlement type="city">Göttingen</settlement></placeName></affiliation></author><author><name sortKey="Kremer, Berry" sort="Kremer, Berry" uniqKey="Kremer B" first="Berry" last="Kremer">Berry Kremer</name><affiliation wicri:level="1"><inist:fA14 i1="14"><s1>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center</s1><s2>Nijnaegen</s2><s3>NLD</s3><sZ>14 aut.</sZ><sZ>24 aut.</sZ></inist:fA14><country>Pays-Bas</country><wicri:noRegion>Nijnaegen</wicri:noRegion></affiliation></author><author><name sortKey="Schulz, Jorg B" sort="Schulz, Jorg B" uniqKey="Schulz J" first="Jörg B." last="Schulz">Jörg B. Schulz</name><affiliation wicri:level="3"><inist:fA14 i1="22"><s1>Department of Neurology, RWTH Aachen, University Medical Hospital</s1><s2>Aachen</s2><s3>DEU</s3><sZ>25 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Rhénanie-du-Nord-Westphalie</region><region type="district" nuts="2">District de Cologne</region><settlement type="city">Aix-la-Chapelle</settlement></placeName></affiliation></author><author><name sortKey="Klopstock, Thomas" sort="Klopstock, Thomas" uniqKey="Klopstock T" first="Thomas" last="Klopstock">Thomas Klopstock</name><affiliation wicri:level="3"><inist:fA14 i1="23"><s1>Department of Neurology, Friedrich-Baur-Institute, University Hospital of Ludwig-Maximilians-University</s1><s2>München</s2><s3>DEU</s3><sZ>26 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Bavière</region><region type="district" nuts="2">District de Haute-Bavière</region><settlement type="city">Munich</settlement></placeName></affiliation></author><author><name sortKey="Melegh, Bela" sort="Melegh, Bela" uniqKey="Melegh B" first="Bela" last="Melegh">Bela Melegh</name><affiliation wicri:level="1"><inist:fA14 i1="24"><s1>Department of Medical Genetics and Child Development, University of Pécs</s1><s2>Pécs</s2><s3>HUN</s3><sZ>27 aut.</sZ></inist:fA14><country>Hongrie</country><wicri:noRegion>Pécs</wicri:noRegion></affiliation></author><author><name sortKey="Tezenas Du Montcel, Sophie" sort="Tezenas Du Montcel, Sophie" uniqKey="Tezenas Du Montcel S" first="Sophie" last="Tezenas Du Montcel">Sophie Tezenas Du Montcel</name><affiliation wicri:level="1"><inist:fA14 i1="02"><s1>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié-Salpêtrière, Assistance Publique-Hôpitaux</s1><s2>Paris</s2><s3>FRA</s3><sZ>2 aut.</sZ><sZ>28 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation><affiliation wicri:level="1"><inist:fA14 i1="03"><s1>Modeling in Clinical Research, University Pierre et Marie Curie</s1><s2>Paris</s2><s3>FRA</s3><sZ>2 aut.</sZ><sZ>28 aut.</sZ></inist:fA14><country>France</country><placeName><settlement type="city">Paris</settlement></placeName></affiliation></author><author><name sortKey="Klockgether, Thomas" sort="Klockgether, Thomas" uniqKey="Klockgether T" first="Thomas" last="Klockgether">Thomas Klockgether</name><affiliation wicri:level="3"><inist:fA14 i1="01"><s1>Department of Neurology, University Hospital of Bonn</s1><s2>Bonn</s2><s3>DEU</s3><sZ>1 aut.</sZ><sZ>29 aut.</sZ></inist:fA14><country>Allemagne</country><placeName><region type="land" nuts="1">Rhénanie-du-Nord-Westphalie</region><region type="district" nuts="2">District de Cologne</region><settlement type="city">Bonn</settlement></placeName></affiliation></author></analytic><series><title level="j" type="main">Movement disorders</title><title level="j" type="abbreviated">Mov. disord.</title><idno type="ISSN">0885-3185</idno><imprint><date when="2010">2010</date></imprint></series></biblStruct></sourceDesc><seriesStmt><title level="j" type="main">Movement disorders</title><title level="j" type="abbreviated">Mov. disord.</title><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Depression</term><term>Health status</term><term>Nervous system diseases</term><term>Quality of life</term><term>Spinocerebellar ataxia</term></keywords><keywords scheme="Pascal" xml:lang="fr"><term>Etat dépressif</term><term>Pathologie du système nerveux</term><term>Etat sanitaire</term><term>Ataxie spinocérébelleuse</term><term>Qualité de vie</term></keywords></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">Patient-based measures of subjective health status are increasingly used as outcome measures in interventional trials. We aimed to determine the variability and predictors of subjective health ratings in a possible target group for future interventions: the spinocerebellar ataxias (SCAs). A consecutive sample of 526 patients with otherwise unexplained progressive ataxia and genetic diagnoses of SCA1 (117), SCA2 (163), SCA3 (139), and SCA6 (107) were enrolled at 18 European referral centers. Subjective health status was assessed with a generic measure of health related quality of life, the EQ-5D (Euroqol) questionnaire. In addition, we performed a neurological examination and a screening questionnaire for affective disorders (patient health questionnaire). Patient-reported health status was compromised in patients of all genotypes (EQ-5D visual analogue scale (EQ-VAS) mean 61.45 ± 20.8). Specifically, problems were reported in the dimensions of mobility (86.9% of patients), usual activities (68%), pain/discomfort (49.4%), depression/ anxiety (46.4%), and self care (38.2%). Multivariate analysis revealed three independent predictors of subjective health status: ataxia severity, extent of noncerebellar involvement, and the presence of depressive syndrome. This model explained 30.5% of EQ-VAS variance in the whole sample and might be extrapolated to other SCA genotypes.</div></front></TEI><affiliations><list><country><li>Allemagne</li><li>Autriche</li><li>Belgique</li><li>Espagne</li><li>France</li><li>Hongrie</li><li>Italie</li><li>Pays-Bas</li><li>Pologne</li><li>Royaume-Uni</li></country><region><li>Angleterre</li><li>Bade-Wurtemberg</li><li>Basse-Saxe</li><li>Bavière</li><li>District de Cologne</li><li>District de Haute-Bavière</li><li>District de Tübingen</li><li>Grand Londres</li><li>Lombardie</li><li>Rhénanie-du-Nord-Westphalie</li><li>Région de Bruxelles-Capitale</li></region><settlement><li>Aix-la-Chapelle</li><li>Bonn</li><li>Bruxelles</li><li>Göttingen</li><li>Londres</li><li>Milan</li><li>Munich</li><li>Paris</li><li>Tübingen</li></settlement><orgName><li>Université libre de Bruxelles</li></orgName></list><tree><country name="Allemagne"><region name="Rhénanie-du-Nord-Westphalie"><name sortKey="Schmitz Hubsch, Tanja" sort="Schmitz Hubsch, Tanja" uniqKey="Schmitz Hubsch T" first="Tanja" last="Schmitz-Hübsch">Tanja Schmitz-Hübsch</name></region><name sortKey="Globas, Christoph" sort="Globas, Christoph" uniqKey="Globas C" first="Christoph" last="Globas">Christoph Globas</name><name sortKey="Kang, Jun Suk" sort="Kang, Jun Suk" uniqKey="Kang J" first="Jun-Suk" last="Kang">Jun-Suk Kang</name><name sortKey="Klockgether, Thomas" sort="Klockgether, Thomas" uniqKey="Klockgether T" first="Thomas" last="Klockgether">Thomas Klockgether</name><name sortKey="Klopstock, Thomas" sort="Klopstock, Thomas" uniqKey="Klopstock T" first="Thomas" last="Klopstock">Thomas Klopstock</name><name sortKey="Ratzka, Susanne" sort="Ratzka, Susanne" uniqKey="Ratzka S" first="Susanne" last="Ratzka">Susanne Ratzka</name><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><name sortKey="Schulz, Jorg B" sort="Schulz, Jorg B" uniqKey="Schulz J" first="Jörg B." last="Schulz">Jörg B. Schulz</name><name sortKey="Szymanski, Sandra" sort="Szymanski, Sandra" uniqKey="Szymanski S" first="Sandra" last="Szymanski">Sandra Szymanski</name><name sortKey="Timmann, Dagmar" sort="Timmann, Dagmar" uniqKey="Timmann D" first="Dagmar" last="Timmann">Dagmar Timmann</name></country><country name="France"><noRegion><name sortKey="Coudert, Mathieu" sort="Coudert, Mathieu" uniqKey="Coudert M" first="Mathieu" last="Coudert">Mathieu Coudert</name></noRegion><name sortKey="Charles, Perrine" sort="Charles, Perrine" uniqKey="Charles P" first="Perrine" last="Charles">Perrine Charles</name><name sortKey="Charles, Perrine" sort="Charles, Perrine" uniqKey="Charles P" first="Perrine" last="Charles">Perrine Charles</name><name sortKey="Coudert, Mathieu" sort="Coudert, Mathieu" uniqKey="Coudert M" first="Mathieu" last="Coudert">Mathieu Coudert</name><name sortKey="Durr, Alexandra" sort="Durr, Alexandra" uniqKey="Durr A" first="Alexandra" last="Dürr">Alexandra Dürr</name><name sortKey="Durr, Alexandra" sort="Durr, Alexandra" uniqKey="Durr A" first="Alexandra" last="Dürr">Alexandra Dürr</name><name sortKey="Ribai, Pascale" sort="Ribai, Pascale" uniqKey="Ribai P" first="Pascale" last="Ribai">Pascale Ribai</name><name sortKey="Ribai, Pascale" sort="Ribai, Pascale" uniqKey="Ribai P" first="Pascale" last="Ribai">Pascale Ribai</name><name sortKey="Tezenas Du Montcel, Sophie" sort="Tezenas Du Montcel, Sophie" uniqKey="Tezenas Du Montcel S" first="Sophie" last="Tezenas Du Montcel">Sophie Tezenas Du Montcel</name><name sortKey="Tezenas Du Montcel, Sophie" sort="Tezenas Du Montcel, Sophie" uniqKey="Tezenas Du Montcel S" first="Sophie" last="Tezenas Du Montcel">Sophie Tezenas Du Montcel</name></country><country name="Royaume-Uni"><region name="Angleterre"><name sortKey="Giunti, Paola" sort="Giunti, Paola" uniqKey="Giunti P" first="Paola" last="Giunti">Paola Giunti</name></region></country><country name="Hongrie"><noRegion><name sortKey="Baliko, Laszlo" sort="Baliko, Laszlo" uniqKey="Baliko L" first="Laszlo" last="Baliko">Laszlo Baliko</name></noRegion><name sortKey="Melegh, Bela" sort="Melegh, Bela" uniqKey="Melegh B" first="Bela" last="Melegh">Bela Melegh</name></country><country name="Italie"><region name="Lombardie"><name sortKey="Fancellu, Roberto" sort="Fancellu, Roberto" uniqKey="Fancellu R" first="Roberto" last="Fancellu">Roberto Fancellu</name></region><name sortKey="Filla, Alessandro" sort="Filla, Alessandro" uniqKey="Filla A" first="Alessandro" last="Filla">Alessandro Filla</name><name sortKey="Mariotti, Caterina" sort="Mariotti, Caterina" uniqKey="Mariotti C" first="Caterina" last="Mariotti">Caterina Mariotti</name></country><country name="Pologne"><noRegion><name sortKey="Rakowicz, Maryla" sort="Rakowicz, Maryla" uniqKey="Rakowicz M" first="Maryla" last="Rakowicz">Maryla Rakowicz</name></noRegion><name sortKey="Rola, Rafal" sort="Rola, Rafal" uniqKey="Rola R" first="Rafal" last="Rola">Rafal Rola</name><name sortKey="Zdzienicka, Elszbieta" sort="Zdzienicka, Elszbieta" uniqKey="Zdzienicka E" first="Elszbieta" last="Zdzienicka">Elszbieta Zdzienicka</name></country><country name="Espagne"><noRegion><name sortKey="Infante, Jon" sort="Infante, Jon" uniqKey="Infante J" first="Jon" last="Infante">Jon Infante</name></noRegion></country><country name="Pays-Bas"><noRegion><name sortKey="Van De Warrenburg, Bart P C" sort="Van De Warrenburg, Bart P C" uniqKey="Van De Warrenburg B" first="Bart P. C." last="Van De Warrenburg">Bart P. C. Van De Warrenburg</name></noRegion><name sortKey="Kremer, Berry" sort="Kremer, Berry" uniqKey="Kremer B" first="Berry" last="Kremer">Berry Kremer</name></country><country name="Autriche"><noRegion><name sortKey="Boesch, Sylvia" sort="Boesch, Sylvia" uniqKey="Boesch S" first="Sylvia" last="Boesch">Sylvia Boesch</name></noRegion></country><country name="Belgique"><region name="Région de Bruxelles-Capitale"><name sortKey="Depondt, Chantal" sort="Depondt, Chantal" uniqKey="Depondt C" first="Chantal" last="Depondt">Chantal Depondt</name></region></country></tree></affiliations></record>Pour manipuler ce document sous Unix (Dilib)
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