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Self‐rated health status in spinocerebellar ataxia—Results from a European multicenter study
Author(s) -
SchmitzHübsch Tanja,
Coudert Mathieu,
Giunti Paola,
Globas Christoph,
Baliko Laszlo,
Fancellu Roberto,
Mariotti Caterina,
Filla Alessandro,
Rakowicz Maryla,
Charles Perrine,
Ribai Pascale,
Szymanski Sandra,
Infante Jon,
van de Warrenburg Bart P.C.,
Dürr Alexandra,
Timmann Dagmar,
Boesch Sylvia,
Rola Rafal,
Depondt Chantal,
Schöls Ludger,
Zdzienicka Elszbieta,
Kang JunSuk,
Ratzka Susanne,
Kremer Berry,
Schulz Jörg B.,
Klopstock Thomas,
Melegh Bela,
du Montcel Sophie Tezenas,
Klockgether Thomas
Publication year - 2010
Publication title -
movement disorders
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 3.352
H-Index - 198
eISSN - 1531-8257
pISSN - 0885-3185
DOI - 10.1002/mds.22740
Subject(s) - spinocerebellar ataxia , quality of life (healthcare) , medicine , eq 5d , ataxia , visual analogue scale , physical therapy , anxiety , depression (economics) , referral , psychological intervention , patient health questionnaire , multivariate analysis of variance , clinical psychology , psychiatry , health related quality of life , depressive symptoms , family medicine , disease , machine learning , computer science , nursing , economics , macroeconomics
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