Self‐rated health status in spinocerebellar ataxia—Results from a European multicenter study
Identifieur interne : 000718 ( Istex/Curation ); précédent : 000717; suivant : 000719Self‐rated health status in spinocerebellar ataxia—Results from a European multicenter 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 ] ; 2010-04-15.
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. © 2010 Movement Disorder Society
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DOI: 10.1002/mds.22740
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Hospital of Bochum, Bochum</wicri:regionArea></affiliation></author><author><name sortKey="Infante, Jon" sort="Infante, Jon" uniqKey="Infante J" first="Jon" last="Infante">Jon Infante</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital “Marqués de Valldecilla,” CIBERNED, Santander, Spain</mods:affiliation><country xml:lang="fr">Espagne</country><wicri:regionArea>Department of Neurology, University Hospital “Marqués de Valldecilla,” CIBERNED, Santander</wicri:regionArea></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. 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Van De Warrenburg</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen</wicri:regionArea></affiliation></author><author><name sortKey="Durr, Alexandra" sort="Durr, Alexandra" uniqKey="Durr A" first="Alexandra" last="Dürr">Alexandra Dürr</name><affiliation wicri:level="1"><mods:affiliation>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière 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Neurology, University of Innsbruck, Innsbruck</wicri:regionArea></affiliation></author><author><name sortKey="Rola, Rafal" sort="Rola, Rafal" uniqKey="Rola R" first="Rafal" last="Rola">Rafal Rola</name><affiliation wicri:level="1"><mods:affiliation>First Department of Neurology, Institute of Psychiatry and Neurology, Warsaw, Poland</mods:affiliation><country xml:lang="fr">Pologne</country><wicri:regionArea>First Department of Neurology, Institute of Psychiatry and Neurology, Warsaw</wicri:regionArea></affiliation></author><author><name sortKey="Depondt, Chantal" sort="Depondt, Chantal" uniqKey="Depondt C" first="Chantal" last="Depondt">Chantal Depondt</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles, Brussels, Belgium</mods:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles, Brussels</wicri:regionArea></affiliation></author><author><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen</wicri:regionArea></affiliation></author><author><name sortKey="Zdzienicka, Elszbieta" sort="Zdzienicka, Elszbieta" uniqKey="Zdzienicka E" first="Elszbieta" last="Zdzienicka">Elszbieta Zdzienicka</name><affiliation wicri:level="1"><mods:affiliation>Department of Genetics, Institute of Psychiatry and Neurology, Warsaw, Poland</mods:affiliation><country xml:lang="fr">Pologne</country><wicri:regionArea>Department of Genetics, Institute of Psychiatry and Neurology, Warsaw</wicri:regionArea></affiliation></author><author><name sortKey="Kang, Jun Uk" sort="Kang, Jun Uk" uniqKey="Kang J" first="Jun-Suk" last="Kang">Jun-Suk Kang</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University of Frankfurt, Frankfurt/M, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University of Frankfurt, Frankfurt/M</wicri:regionArea></affiliation></author><author><name sortKey="Ratzka, Susanne" sort="Ratzka, Susanne" uniqKey="Ratzka S" first="Susanne" last="Ratzka">Susanne Ratzka</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Kremer, Berry" sort="Kremer, Berry" uniqKey="Kremer B" first="Berry" last="Kremer">Berry Kremer</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen</wicri:regionArea></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="1"><mods:affiliation>Department of Neurology, RWTH Aachen, University Medical Hospital, Aachen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, RWTH Aachen, University Medical Hospital, Aachen</wicri:regionArea></affiliation></author><author><name sortKey="Klopstock, Thomas" sort="Klopstock, Thomas" uniqKey="Klopstock T" first="Thomas" last="Klopstock">Thomas Klopstock</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Friedrich‐Baur‐Institute, University Hospital of Ludwig‐Maximilians‐University, München, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, Friedrich‐Baur‐Institute, University Hospital of Ludwig‐Maximilians‐University, München</wicri:regionArea></affiliation></author><author><name sortKey="Melegh, Bela" sort="Melegh, Bela" uniqKey="Melegh B" first="Bela" last="Melegh">Bela Melegh</name><affiliation wicri:level="1"><mods:affiliation>Department of Medical Genetics and Child Development, University of Pécs, Pécs, Hungary</mods:affiliation><country xml:lang="fr">Hongrie</country><wicri:regionArea>Department of Medical Genetics and Child Development, University of Pécs, Pécs</wicri:regionArea></affiliation></author><author><name sortKey="Du Montcel, Sophie Tezenas" sort="Du Montcel, Sophie Tezenas" uniqKey="Du Montcel S" first="Sophie Tezenas" last="Du Montcel">Sophie Tezenas Du Montcel</name><affiliation wicri:level="1"><mods:affiliation>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Modeling in Clinical Research, University Pierre et Marie Curie, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Modeling in Clinical Research, University Pierre et Marie Curie, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Klockgether, Thomas" sort="Klockgether, Thomas" uniqKey="Klockgether T" first="Thomas" last="Klockgether">Thomas Klockgether</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital of Bonn, Bonn, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University Hospital of Bonn, Bonn</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:F565C9E4389796ABDE540475935DE23A74B8DFC4</idno><date when="2010" year="2010">2010</date><idno type="doi">10.1002/mds.22740</idno><idno type="url">https://api.istex.fr/document/F565C9E4389796ABDE540475935DE23A74B8DFC4/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">000718</idno><idno type="wicri:Area/Istex/Curation">000718</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a" type="main" xml:lang="en">Self‐rated health status in spinocerebellar ataxia—Results from a European multicenter study</title><author><name sortKey="Schmitz Bsch, Tanja" sort="Schmitz Bsch, Tanja" uniqKey="Schmitz Bsch T" first="Tanja" last="Schmitz-Hübsch">Tanja Schmitz-Hübsch</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital of Bonn, Bonn, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University Hospital of Bonn, Bonn</wicri:regionArea></affiliation></author><author><name sortKey="Coudert, Mathieu" sort="Coudert, Mathieu" uniqKey="Coudert M" first="Mathieu" last="Coudert">Mathieu Coudert</name><affiliation wicri:level="1"><mods:affiliation>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Modeling in Clinical Research, University Pierre et Marie Curie, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Modeling in Clinical Research, University Pierre et Marie Curie, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Giunti, Paola" sort="Giunti, Paola" uniqKey="Giunti P" first="Paola" last="Giunti">Paola Giunti</name><affiliation wicri:level="1"><mods:affiliation>Department of Molecular Neuroscience, Institute of Neurology, Queen Square, London, United Kingdom</mods:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>Department of Molecular Neuroscience, Institute of Neurology, Queen Square, London</wicri:regionArea></affiliation></author><author><name sortKey="Globas, Christoph" sort="Globas, Christoph" uniqKey="Globas C" first="Christoph" last="Globas">Christoph Globas</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen</wicri:regionArea></affiliation></author><author><name sortKey="Baliko, Laszlo" sort="Baliko, Laszlo" uniqKey="Baliko L" first="Laszlo" last="Baliko">Laszlo Baliko</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology and Stroke, County Hospital, Veszprém, Hungary</mods:affiliation><country xml:lang="fr">Hongrie</country><wicri:regionArea>Department of Neurology and Stroke, County Hospital, Veszprém</wicri:regionArea></affiliation></author><author><name sortKey="Fancellu, Roberto" sort="Fancellu, Roberto" uniqKey="Fancellu R" first="Roberto" last="Fancellu">Roberto Fancellu</name><affiliation wicri:level="1"><mods:affiliation>Department of Biochemistry and Genetics, Fondazione‐IRCCS, Istituto Neurologico Carlo Besta, Milan, Italy</mods:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Department of Biochemistry and Genetics, Fondazione‐IRCCS, Istituto Neurologico Carlo Besta, Milan</wicri:regionArea></affiliation></author><author><name sortKey="Mariotti, Caterina" sort="Mariotti, Caterina" uniqKey="Mariotti C" first="Caterina" last="Mariotti">Caterina Mariotti</name><affiliation wicri:level="1"><mods:affiliation>Department of Biochemistry and Genetics, Fondazione‐IRCCS, Istituto Neurologico Carlo Besta, Milan, Italy</mods:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Department of Biochemistry and Genetics, Fondazione‐IRCCS, Istituto Neurologico Carlo Besta, Milan</wicri:regionArea></affiliation></author><author><name sortKey="Filla, Alessandro" sort="Filla, Alessandro" uniqKey="Filla A" first="Alessandro" last="Filla">Alessandro Filla</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University of Naples, Naples, Italy</mods:affiliation><country xml:lang="fr">Italie</country><wicri:regionArea>Department of Neurology, University of Naples, Naples</wicri:regionArea></affiliation></author><author><name sortKey="Rakowicz, Maryla" sort="Rakowicz, Maryla" uniqKey="Rakowicz M" first="Maryla" last="Rakowicz">Maryla Rakowicz</name><affiliation wicri:level="1"><mods:affiliation>Department of Clinical Neurophysiology, Institute of Psychiatry and Neurology, Warsaw, Poland</mods:affiliation><country xml:lang="fr">Pologne</country><wicri:regionArea>Department of Clinical Neurophysiology, Institute of Psychiatry and Neurology, Warsaw</wicri:regionArea></affiliation></author><author><name sortKey="Charles, Perrine" sort="Charles, Perrine" uniqKey="Charles P" first="Perrine" last="Charles">Perrine Charles</name><affiliation wicri:level="1"><mods:affiliation>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Ribai, Pascale" sort="Ribai, Pascale" uniqKey="Ribai P" first="Pascale" last="Ribai">Pascale Ribai</name><affiliation wicri:level="1"><mods:affiliation>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Szymanski, Sandra" sort="Szymanski, Sandra" uniqKey="Szymanski S" first="Sandra" last="Szymanski">Sandra Szymanski</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, St. Josef Hospital, University Hospital of Bochum, Bochum, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, St. Josef Hospital, University Hospital of Bochum, Bochum</wicri:regionArea></affiliation></author><author><name sortKey="Infante, Jon" sort="Infante, Jon" uniqKey="Infante J" first="Jon" last="Infante">Jon Infante</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital “Marqués de Valldecilla,” CIBERNED, Santander, Spain</mods:affiliation><country xml:lang="fr">Espagne</country><wicri:regionArea>Department of Neurology, University Hospital “Marqués de Valldecilla,” CIBERNED, Santander</wicri:regionArea></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"><mods:affiliation>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen</wicri:regionArea></affiliation></author><author><name sortKey="Durr, Alexandra" sort="Durr, Alexandra" uniqKey="Durr A" first="Alexandra" last="Dürr">Alexandra Dürr</name><affiliation wicri:level="1"><mods:affiliation>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>INSERM, UMR_S679 Neurologie and Thérapeutique Expérimentale, F‐75013, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>AP‐HP, Department of Genetics and Cytogenetics, Hôpital de la Salpêtrière F‐75013, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Timmann, Dagmar" sort="Timmann, Dagmar" uniqKey="Timmann D" first="Dagmar" last="Timmann">Dagmar Timmann</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital of Essen, Essen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University Hospital of Essen, Essen</wicri:regionArea></affiliation></author><author><name sortKey="Boesch, Sylvia" sort="Boesch, Sylvia" uniqKey="Boesch S" first="Sylvia" last="Boesch">Sylvia Boesch</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University of Innsbruck, Innsbruck, Austria</mods:affiliation><country xml:lang="fr">Autriche</country><wicri:regionArea>Department of Neurology, University of Innsbruck, Innsbruck</wicri:regionArea></affiliation></author><author><name sortKey="Rola, Rafal" sort="Rola, Rafal" uniqKey="Rola R" first="Rafal" last="Rola">Rafal Rola</name><affiliation wicri:level="1"><mods:affiliation>First Department of Neurology, Institute of Psychiatry and Neurology, Warsaw, Poland</mods:affiliation><country xml:lang="fr">Pologne</country><wicri:regionArea>First Department of Neurology, Institute of Psychiatry and Neurology, Warsaw</wicri:regionArea></affiliation></author><author><name sortKey="Depondt, Chantal" sort="Depondt, Chantal" uniqKey="Depondt C" first="Chantal" last="Depondt">Chantal Depondt</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles, Brussels, Belgium</mods:affiliation><country xml:lang="fr">Belgique</country><wicri:regionArea>Department of Neurology, Hôpital Erasme, Université Libre de Bruxelles, Brussels</wicri:regionArea></affiliation></author><author><name sortKey="Schols, Ludger" sort="Schols, Ludger" uniqKey="Schols L" first="Ludger" last="Schöls">Ludger Schöls</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology and Hertie‐Institute for Clinical Brain Research, University of Tübingen, Tübingen</wicri:regionArea></affiliation></author><author><name sortKey="Zdzienicka, Elszbieta" sort="Zdzienicka, Elszbieta" uniqKey="Zdzienicka E" first="Elszbieta" last="Zdzienicka">Elszbieta Zdzienicka</name><affiliation wicri:level="1"><mods:affiliation>Department of Genetics, Institute of Psychiatry and Neurology, Warsaw, Poland</mods:affiliation><country xml:lang="fr">Pologne</country><wicri:regionArea>Department of Genetics, Institute of Psychiatry and Neurology, Warsaw</wicri:regionArea></affiliation></author><author><name sortKey="Kang, Jun Uk" sort="Kang, Jun Uk" uniqKey="Kang J" first="Jun-Suk" last="Kang">Jun-Suk Kang</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University of Frankfurt, Frankfurt/M, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University of Frankfurt, Frankfurt/M</wicri:regionArea></affiliation></author><author><name sortKey="Ratzka, Susanne" sort="Ratzka, Susanne" uniqKey="Ratzka S" first="Susanne" last="Ratzka">Susanne Ratzka</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurodegeneration and Restorative Research, Centers of Molecular Physiology of the Brain and Neurological Medicine, University Hospital of Göttingen, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Kremer, Berry" sort="Kremer, Berry" uniqKey="Kremer B" first="Berry" last="Kremer">Berry Kremer</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Donders Centre for Neuroscience, Radboud University Nijmegen Medical Center, Nijmegen</wicri:regionArea></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="1"><mods:affiliation>Department of Neurology, RWTH Aachen, University Medical Hospital, Aachen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, RWTH Aachen, University Medical Hospital, Aachen</wicri:regionArea></affiliation></author><author><name sortKey="Klopstock, Thomas" sort="Klopstock, Thomas" uniqKey="Klopstock T" first="Thomas" last="Klopstock">Thomas Klopstock</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Friedrich‐Baur‐Institute, University Hospital of Ludwig‐Maximilians‐University, München, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, Friedrich‐Baur‐Institute, University Hospital of Ludwig‐Maximilians‐University, München</wicri:regionArea></affiliation></author><author><name sortKey="Melegh, Bela" sort="Melegh, Bela" uniqKey="Melegh B" first="Bela" last="Melegh">Bela Melegh</name><affiliation wicri:level="1"><mods:affiliation>Department of Medical Genetics and Child Development, University of Pécs, Pécs, Hungary</mods:affiliation><country xml:lang="fr">Hongrie</country><wicri:regionArea>Department of Medical Genetics and Child Development, University of Pécs, Pécs</wicri:regionArea></affiliation></author><author><name sortKey="Du Montcel, Sophie Tezenas" sort="Du Montcel, Sophie Tezenas" uniqKey="Du Montcel S" first="Sophie Tezenas" last="Du Montcel">Sophie Tezenas Du Montcel</name><affiliation wicri:level="1"><mods:affiliation>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Department of Biostatistics and Medical Informatics, Hôpital de la Pitié‐Salpêtrière, Assistance Publique‐Hôpitaux, Paris</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Modeling in Clinical Research, University Pierre et Marie Curie, Paris, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Modeling in Clinical Research, University Pierre et Marie Curie, Paris</wicri:regionArea></affiliation></author><author><name sortKey="Klockgether, Thomas" sort="Klockgether, Thomas" uniqKey="Klockgether T" first="Thomas" last="Klockgether">Thomas Klockgether</name><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, University Hospital of Bonn, Bonn, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Department of Neurology, University Hospital of Bonn, Bonn</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="2010-04-15">2010-04-15</date><biblScope unit="vol">25</biblScope><biblScope unit="issue">5</biblScope><biblScope unit="page" from="587">587</biblScope><biblScope unit="page" to="595">595</biblScope></imprint><idno type="ISSN">0885-3185</idno></series><idno type="istex">F565C9E4389796ABDE540475935DE23A74B8DFC4</idno><idno type="DOI">10.1002/mds.22740</idno><idno type="ArticleID">MDS22740</idno></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0885-3185</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>EQ‐5D</term><term>depression</term><term>quality of life</term><term>spinocerebellar ataxia</term><term>subjective health rating</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></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. © 2010 Movement Disorder Society</div></front></TEI></record>Pour manipuler ce document sous Unix (Dilib)
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