%0 Journal Article
%A Iskandar, Audrey
%A Buchholz, Maresa
%A Blotenberg, Iris
%A Schmitz-Hübsch, Tanja
%A Faber, Jennifer
%A Jacobi, Heike
%A Xie, Feng
%A Grobe-Einsler, Marcus
%A Klockgether, Thomas
%A Michalowsky, Bernhard
%A ESMI
%T Longitudinal description of health-related quality of life and depressive symptoms in polyQ spinocerebellar ataxia patients.
%J Journal of neurology
%V 272
%N 5
%@ 0367-004X
%C [Darmstadt]
%I Steinkopff
%M DZNE-2025-00508
%P 323
%D 2025
%X Due to limited treatment options, managing symptoms has dominated care for Spinocerebellar Ataxia (SCA). Little attention has been given to health-related quality of life (HRQoL) and depressive symptoms experienced by patients across disease duration.To investigate the course of HRQoL and the severity of depressive symptoms in SCA from disease onset to 26 years after onset and identify influencing factors.We analyzed data from two longitudinal SCA cohorts, the EUROSCA (European Spinocerebellar Ataxia Registry) and ESMI study (European Spinocerebellar Ataxia Type 3/Machado-Joseph Disease Initiative). Multilevel mixed-effects models were employed to demonstrate the course of HRQoL and depressive symptoms severity to investigate the role of disease progression with disease duration as a predictor of interest, along with time-varying clinical variables and time-fixed covariates.Seven hundred seventy four participants (Mage = 50.8 ± 13.4; 48.6
%K Humans
%K Female
%K Male
%K Quality of Life: psychology
%K Middle Aged
%K Spinocerebellar Ataxias: psychology
%K Spinocerebellar Ataxias: complications
%K Spinocerebellar Ataxias: genetics
%K Longitudinal Studies
%K Adult
%K Depression: etiology
%K Depression: psychology
%K Aged
%K Disease Progression
%K Severity of Illness Index
%K Registries
%K Peptides: genetics
%K Ataxia (Other)
%K Genetic disorder (Other)
%K Health-related quality of life (Other)
%K Patient-centered care (Other)
%K Psychologic well-being (Other)
%K Rare disease (Other)
%K polyglutamine (NLM Chemicals)
%K Peptides (NLM Chemicals)
%F PUB:(DE-HGF)16
%9 Journal Article
%2 pmc:PMC11982069
%$ pmid:40202598
%R 10.1007/s00415-025-13024-0
%U https://pub.dzne.de/record/277976