{"database":"biostudies-literature","file_versions":[],"scores":null,"additional":{"omics_type":["Unknown"],"volume":["23(3)"],"submitter":["Buchholz M"],"funding":["Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE) in der Helmholtz-Gemeinschaft"],"pubmed_abstract":["Although health-related quality of life (HRQoL) has developed into a crucial outcome parameter in clinical research, evidence of the EQ-5D-3L validation performance is lacking in patients with spinocerebellar ataxia (SCA) types 1, 2, 3, and 6. The objective of this study is to assess the acceptability, validity, reliability, and responsiveness of the EQ-5D-3L. For n = 842 predominantly European SCA patients of two longitudinal cohort studies, the EQ-5D-3L, PHQ-9 (Patient Health Questionnaire), and ataxia-specific clinical assessments (SARA: Scale for Assessment and Rating of Ataxia; ADL: activities of daily living as part of Friedreich's Ataxia Rating Scale; INAS: Inventory of Non-Ataxia Signs) were assessed at baseline and multiple annual follow-ups. The EQ-5D-3L was evaluated regarding a"],"journal":["Cerebellum (London, England)"],"pagination":["1020-1030"],"full_dataset_link":["https://www.ebi.ac.uk/biostudies/studies/S-EPMC11102408"],"repository":["biostudies-literature"],"pubmed_title":["Health-Related Quality of Life in Patients with Spinocerebellar Ataxia: a Validation Study of the EQ-5D-3L."],"pmcid":["PMC11102408"],"pubmed_authors":["Rakowicz M","Radke A","Boesch S","Sobanska A","Timmann D","Bauer P","Onyike C","Xie F","du Montcel ST","Gulin O","Parkinson MH","Synofzik M","Panzeri M","Sulek A","Diallo A","Hengel H","Klockgether T","Labrum R","Baliko L","Brice A","Santana M","Molho S","ESMI  study group","Cook A","Marelli C","Schulz JB","Thieme A","Schmitz-Hubsch T","Wilke C","Schols L","Durr A","Schmahmann J","Antenora A","Jacobi H","Nanetti L","Buchholz M","Infante J","Povazan M","van de Warrenburg B","Pandolfo M","van de Warrenburg BP","Riess O","Giunti P","de Almeida LP","EUROSCA study group","Mariotti C","Dogan I","Garcia-Moreno H","Raposo M","Charles P","Berciano J","Weber N","van Gaalen J","Michalowsky B","Szymanski S","de Vries J","Kang JS","Ratai EM","Melegh B","Faber J","Joers J","Lima M","Koyak B","Hubener-Schmid J","Filla A","Grobe-Einsler M","Reetz K"],"additional_accession":[]},"is_claimable":false,"name":"Health-Related Quality of Life in Patients with Spinocerebellar Ataxia: a Validation Study of the EQ-5D-3L.","description":"Although health-related quality of life (HRQoL) has developed into a crucial outcome parameter in clinical research, evidence of the EQ-5D-3L validation performance is lacking in patients with spinocerebellar ataxia (SCA) types 1, 2, 3, and 6. The objective of this study is to assess the acceptability, validity, reliability, and responsiveness of the EQ-5D-3L. For n = 842 predominantly European SCA patients of two longitudinal cohort studies, the EQ-5D-3L, PHQ-9 (Patient Health Questionnaire), and ataxia-specific clinical assessments (SARA: Scale for Assessment and Rating of Ataxia; ADL: activities of daily living as part of Friedreich's Ataxia Rating Scale; INAS: Inventory of Non-Ataxia Signs) were assessed at baseline and multiple annual follow-ups. The EQ-5D-3L was evaluated regarding a","dates":{"release":"2024-01-01T00:00:00Z","publication":"2024 Jun","modification":"2026-06-01T05:26:00.563Z","creation":"2026-04-08T09:35:15.255Z"},"accession":"S-EPMC11102408","cross_references":{"pubmed":["37713052"],"doi":["10.1007/s12311-023-01597-3"]}}