Unified Huntington's disease rating scale for advanced patients: Validation and follow-up study.
Identifieur interne : 000067 ( Hal/Corpus ); précédent : 000066; suivant : 000068Unified Huntington's disease rating scale for advanced patients: Validation and follow-up study.
Auteurs : Katia Youssov ; Guillaume Dolbeau ; Patrick Maison ; Marie-Françoise Boissé ; Laurent Cleret De Langavant ; Raymund Roos ; Anne-Catherine Bachoud-LéviSource :
- Movement Disorders [ 0885-3185 ] ; 2013-10.
Abstract
The Unified Huntington's Disease Rating Scale (UHDRS) adequately measures decline in patients at early and moderate stages of Huntington's disease (HD). In advanced patients, floor effects hamper the evaluation, thus calling for an adjusted scale. We designed the UHDRS-For Advanced Patients (UHDRS-FAP), in order to improve longitudinal assessment of patients at advanced disease stage. Sixty-nine patients with a Total Functional Capacity (TFC) ≤ 5 were recruited in France and in the Netherlands. Among them, 45 patients were followed longitudinally (mean 1.6 ± 1.2 years) with the UHDRS-FAP; 30 were also assessed with the UHDRS. Cross-sectional analyses evaluated psychometric properties and interrater reliability of the scale. Longitudinal analyses evaluated the sensitivity to decline compared to the UHDRS. Internal consistency was higher for motor and cognitive scores than for somatic and behavioral scores (0.84, 0.91, 0.70, and 0.49, respectively). Interrater reliability was ≥ 0.88 in all scores. The somatic score, specific to the UHDRS-FAP, declined over time, as well as motor and cognitive performance with both scales. Although performance with the 2 scales correlated, the UHDRS-FAP appeared more sensitive to change and was the only scale that detected decline in patients with a TFC ≤ 1. Neither scale detected a significant decline in behavioral scores. The UHDRS-FAP is reliable and more sensitive to change than the original UHDRS for cognitive and motor domains. It offers items relevant for daily care. Behavioral scores tended to decline but this may reflect the decline in the communicative abilities of the patients. © 2013 International Parkinson and Movement Disorder Society.
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DOI: 10.1002/mds.25654
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Hal:inserm-00908286Le document en format XML
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Paris 12</orgName><orgName type="acronym">UPEC UP12</orgName><desc><address><addrLine>61 avenue du Général de Gaulle - 94010 Créteil cedex</addrLine><country key="FR"></country></address><ref type="url">http://www.u-pec.fr/</ref></desc></org></tutelle><tutelle active="#struct-305148" type="direct"><org type="institution" xml:id="struct-305148" status="INCOMING"><orgName>IFR10</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle></tutelles></hal:affiliation></affiliation></author><author><name sortKey="Boisse, Marie Francoise" sort="Boisse, Marie Francoise" uniqKey="Boisse M" first="Marie-Françoise" last="Boissé">Marie-Françoise Boissé</name><affiliation><hal:affiliation type="laboratory" xml:id="struct-84656" status="VALID"><orgName>Centre de référence maladie de Huntington</orgName><desc><address><country key="FR"></country></address></desc><listRelation><relation active="#struct-300068" type="direct"></relation><relation active="#struct-300087" type="direct"></relation><relation active="#struct-300138" type="direct"></relation><relation active="#struct-300887" type="direct"></relation></listRelation><tutelles><tutelle active="#struct-300068" type="direct"><org type="institution" xml:id="struct-300068" status="VALID"><orgName>Assistance publique - 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Box 9600, Albinusdreef 2, 2300 RC Leiden</addrLine><country key="NL"></country></address></desc><listRelation><relation active="#struct-329273" type="direct"></relation></listRelation><tutelles><tutelle active="#struct-329273" type="direct"><org type="institution" xml:id="struct-329273" status="INCOMING"><orgName>Leiden University Medical Center</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle></tutelles></hal:affiliation></affiliation></author><author><name sortKey="Bachoud Levi, Anne Catherine" sort="Bachoud Levi, Anne Catherine" uniqKey="Bachoud Levi A" first="Anne-Catherine" last="Bachoud-Lévi">Anne-Catherine Bachoud-Lévi</name><affiliation><hal:affiliation type="laboratory" xml:id="struct-84656" status="VALID"><orgName>Centre de référence maladie de Huntington</orgName><desc><address><country key="FR"></country></address></desc><listRelation><relation active="#struct-300068" type="direct"></relation><relation active="#struct-300087" type="direct"></relation><relation active="#struct-300138" type="direct"></relation><relation active="#struct-300887" type="direct"></relation></listRelation><tutelles><tutelle active="#struct-300068" type="direct"><org type="institution" xml:id="struct-300068" status="VALID"><orgName>Assistance publique - Hôpitaux de Paris (AP-HP)</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle><tutelle active="#struct-300087" type="direct"><org type="institution" xml:id="struct-300087" status="VALID"><orgName>Hôpital Henri Mondor</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle><tutelle active="#struct-300138" type="direct"><org type="institution" xml:id="struct-300138" status="VALID"><orgName>Hôpital Armand Trousseau</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle><tutelle active="#struct-300887" type="direct"><org type="institution" xml:id="struct-300887" status="INCOMING"><orgName>Hôpital Pitié-Salpêtrière</orgName><desc><address><country key="FR"></country></address></desc></org></tutelle></tutelles></hal:affiliation></affiliation></author></analytic><idno type="DOI">10.1002/mds.25654</idno><series><title level="j">Movement Disorders</title><idno type="ISSN">0885-3185</idno><imprint><date type="datePub">2013-10</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en">The Unified Huntington's Disease Rating Scale (UHDRS) adequately measures decline in patients at early and moderate stages of Huntington's disease (HD). In advanced patients, floor effects hamper the evaluation, thus calling for an adjusted scale. We designed the UHDRS-For Advanced Patients (UHDRS-FAP), in order to improve longitudinal assessment of patients at advanced disease stage. Sixty-nine patients with a Total Functional Capacity (TFC) ≤ 5 were recruited in France and in the Netherlands. Among them, 45 patients were followed longitudinally (mean 1.6 ± 1.2 years) with the UHDRS-FAP; 30 were also assessed with the UHDRS. Cross-sectional analyses evaluated psychometric properties and interrater reliability of the scale. Longitudinal analyses evaluated the sensitivity to decline compared to the UHDRS. Internal consistency was higher for motor and cognitive scores than for somatic and behavioral scores (0.84, 0.91, 0.70, and 0.49, respectively). Interrater reliability was ≥ 0.88 in all scores. The somatic score, specific to the UHDRS-FAP, declined over time, as well as motor and cognitive performance with both scales. Although performance with the 2 scales correlated, the UHDRS-FAP appeared more sensitive to change and was the only scale that detected decline in patients with a TFC ≤ 1. Neither scale detected a significant decline in behavioral scores. The UHDRS-FAP is reliable and more sensitive to change than the original UHDRS for cognitive and motor domains. It offers items relevant for daily care. Behavioral scores tended to decline but this may reflect the decline in the communicative abilities of the patients. © 2013 International Parkinson and Movement Disorder Society.</div></front></TEI><hal api="V3"><titleStmt><title xml:lang="en">Unified Huntington's disease rating scale for advanced patients: Validation and follow-up study.</title><title xml:lang="en" type="sub">Assessment of Advanced-HD patients</title><author role="aut"><persName><forename type="first">Katia</forename><surname>Youssov</surname></persName><email></email><idno type="halauthor">372618</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation></author><author role="aut"><persName><forename type="first">Guillaume</forename><surname>Dolbeau</surname></persName><email></email><idno type="halauthor">372617</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237489"></affiliation></author><author role="aut"><persName><forename type="first">Patrick</forename><surname>Maison</surname></persName><email></email><idno type="halauthor">307676</idno><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-30692"></affiliation></author><author role="aut"><persName><forename type="first">Marie-Françoise</forename><surname>Boissé</surname></persName><email></email><idno type="halauthor">947107</idno><affiliation ref="#struct-84656"></affiliation></author><author role="aut"><persName><forename type="first">Laurent</forename><surname>Cleret De Langavant</surname></persName><email></email><idno type="halauthor">685970</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-22471"></affiliation></author><author role="aut"><persName><forename type="first">Raymund</forename><forename type="middle">A. C.</forename><surname>Roos</surname></persName><email></email><idno type="halauthor">947146</idno><affiliation ref="#struct-138291"></affiliation></author><author role="crp"><persName><forename type="first">Anne-Catherine</forename><surname>Bachoud-Lévi</surname></persName><email>bachoud@gmail.com</email><idno type="halauthor">635747</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-22471"></affiliation></author><editor role="depositor"><persName><forename>Georges</forename><surname>Guellaen</surname></persName><email>georges.guellaen@inserm.fr</email></editor><funder>Centre of reference of Huntington's disease (Ministry of Health, France) and Contrat d'interface INSERM (ACBL). Additional support through the NeurATRIS (European Advanced Translational Research Infrastructure in Neurosciences) project, the Groupement d'Intérêt Scientifique (GIS)- Institut des Maladies Rares and the" Biomarker program" AP-HP.</funder></titleStmt><editionStmt><edition n="v1" type="current"><date type="whenSubmitted">2013-11-22 15:50:35</date><date type="whenModified">2015-02-12 01:02:49</date><date type="whenReleased">2013-11-22 16:19:13</date><date type="whenProduced">2013-10</date><date type="whenEndEmbargoed">9999-12-31</date><ref type="file" target="http://www.hal.inserm.fr/inserm-00908286/document"><date notBefore="9999-12-31"></date></ref><ref type="file" subtype="author" n="1" target="http://www.hal.inserm.fr/inserm-00908286/file/UHDRS_FAP_2013july25thplain.pdf"><date notBefore="9999-12-31"></date></ref><ref type="annex" subtype="other" n="0" target="http://www.hal.inserm.fr/inserm-00908286/file/Youssov_table_3.doc"><date notBefore="9999-12-31"></date></ref><ref type="file" subtype="author" n="0" target="http://www.hal.inserm.fr/inserm-00908286/file/Youssov_table1July11thplain.pdf"><date notBefore="9999-12-31"></date></ref><ref type="file" subtype="author" n="0" target="http://www.hal.inserm.fr/inserm-00908286/file/uhdrs_fap_eng.pdf"><date notBefore="9999-12-31"></date></ref><ref type="file" subtype="author" n="0" target="http://www.hal.inserm.fr/inserm-00908286/file/Youssov_table2.pdf"><date notBefore="9999-12-31"></date></ref></edition><respStmt><resp>contributor</resp><name key="116303"><persName><forename>Georges</forename><surname>Guellaen</surname></persName><email>georges.guellaen@inserm.fr</email></name></respStmt></editionStmt><publicationStmt><distributor>CCSD</distributor><idno type="halId">inserm-00908286</idno><idno type="halUri">http://www.hal.inserm.fr/inserm-00908286</idno><idno type="halBibtex">youssov:inserm-00908286</idno><idno type="halRefHtml">Movement Disorders, Wiley, 2013, 28 (12), pp.1717-23. <10.1002/mds.25654></idno><idno type="halRef">Movement Disorders, Wiley, 2013, 28 (12), pp.1717-23. <10.1002/mds.25654></idno></publicationStmt><seriesStmt><idno type="stamp" n="INSERM">INSERM - Institut national de la santé et de la recherche médicale</idno><idno type="stamp" n="IMRB" p="CV_IMRB">Institut Mondor de Recherche Biomédicale</idno><idno type="stamp" n="ENS-PARIS">Ecole Normale Supérieure de Paris</idno><idno type="stamp" n="APHP" p="INSERM">AP-HP</idno></seriesStmt><notesStmt><note type="audience" n="2">International</note><note type="popular" n="0">No</note><note type="peer" n="1">Yes</note></notesStmt><sourceDesc><biblStruct><analytic><title xml:lang="en">Unified Huntington's disease rating scale for advanced patients: Validation and follow-up study.</title><title xml:lang="en" type="sub">Assessment of Advanced-HD patients</title><author role="aut"><persName><forename type="first">Katia</forename><surname>Youssov</surname></persName><idno type="halAuthorId">372618</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation></author><author role="aut"><persName><forename type="first">Guillaume</forename><surname>Dolbeau</surname></persName><idno type="halAuthorId">372617</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237489"></affiliation></author><author role="aut"><persName><forename type="first">Patrick</forename><surname>Maison</surname></persName><idno type="halAuthorId">307676</idno><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-30692"></affiliation></author><author role="aut"><persName><forename type="first">Marie-Françoise</forename><surname>Boissé</surname></persName><idno type="halAuthorId">947107</idno><affiliation ref="#struct-84656"></affiliation></author><author role="aut"><persName><forename type="first">Laurent</forename><surname>Cleret De Langavant</surname></persName><idno type="halAuthorId">685970</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-22471"></affiliation></author><author role="aut"><persName><forename type="first">Raymund</forename><forename type="middle">A. C.</forename><surname>Roos</surname></persName><idno type="halAuthorId">947146</idno><affiliation ref="#struct-138291"></affiliation></author><author role="crp"><persName><forename type="first">Anne-Catherine</forename><surname>Bachoud-Lévi</surname></persName><email>bachoud@gmail.com</email><idno type="halAuthorId">635747</idno><affiliation ref="#struct-84656"></affiliation><affiliation ref="#struct-266797"></affiliation><affiliation ref="#struct-237488"></affiliation><affiliation ref="#struct-22471"></affiliation></author></analytic><monogr><idno type="halJournalId" status="VALID">17211</idno><idno type="issn">0885-3185</idno><idno type="eissn">1531-8257</idno><title level="j">Movement Disorders</title><imprint><publisher>Wiley</publisher><biblScope unit="volume">28</biblScope><biblScope unit="issue">12</biblScope><biblScope unit="pp">1717-23</biblScope><date type="datePub">2013-10</date></imprint></monogr><idno type="doi">10.1002/mds.25654</idno><idno type="pubmed">24166899</idno></biblStruct></sourceDesc><profileDesc><langUsage><language ident="en">English</language></langUsage><textClass><classCode scheme="halDomain" n="sdv.bbm">Life Sciences [q-bio]/Biochemistry, Molecular Biology</classCode><classCode scheme="halTypology" n="ART">Journal articles</classCode></textClass><abstract xml:lang="en">The Unified Huntington's Disease Rating Scale (UHDRS) adequately measures decline in patients at early and moderate stages of Huntington's disease (HD). In advanced patients, floor effects hamper the evaluation, thus calling for an adjusted scale. We designed the UHDRS-For Advanced Patients (UHDRS-FAP), in order to improve longitudinal assessment of patients at advanced disease stage. Sixty-nine patients with a Total Functional Capacity (TFC) ≤ 5 were recruited in France and in the Netherlands. Among them, 45 patients were followed longitudinally (mean 1.6 ± 1.2 years) with the UHDRS-FAP; 30 were also assessed with the UHDRS. Cross-sectional analyses evaluated psychometric properties and interrater reliability of the scale. Longitudinal analyses evaluated the sensitivity to decline compared to the UHDRS. Internal consistency was higher for motor and cognitive scores than for somatic and behavioral scores (0.84, 0.91, 0.70, and 0.49, respectively). Interrater reliability was ≥ 0.88 in all scores. The somatic score, specific to the UHDRS-FAP, declined over time, as well as motor and cognitive performance with both scales. Although performance with the 2 scales correlated, the UHDRS-FAP appeared more sensitive to change and was the only scale that detected decline in patients with a TFC ≤ 1. Neither scale detected a significant decline in behavioral scores. The UHDRS-FAP is reliable and more sensitive to change than the original UHDRS for cognitive and motor domains. It offers items relevant for daily care. Behavioral scores tended to decline but this may reflect the decline in the communicative abilities of the patients. © 2013 International Parkinson and Movement Disorder Society.</abstract></profileDesc></hal></record>Pour manipuler ce document sous Unix (Dilib)
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