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Predictors of quality of life in dystonia – a longitudinal study

J. Junker, J. Hall, B. Berman, M. Vidailhet, E. Roze, I. Malaty, J. Jankovic, S. Reich, A. Espay, N. Patel, J. Perlmutter, H. Jinnah, V. Brandt, N. Brueggemann (Luebeck, Germany)

Meeting: 2019 International Congress

Abstract Number: 1293

Keywords: Anxiety, Depression, Dystonia: Clinical features

Session Information

Date: Tuesday, September 24, 2019

Session Title: Dystonia

Session Time: 1:45pm-3:15pm

Location: Les Muses Terrace, Level 3

Objective: To determine the impact of physical and psychiatric morbidity on health-related quality of life (HR-QoL) in a large, international, multi-centre cohort of isolated dystonia patients over two years.

Background: Depression, generalized anxiety disorder (GAD) and social anxiety disorder (SAD) occur frequently in patients with dystonia [1-6]. HR-QoL not only relates to physical but also psychological aspects of the disorder [1,2]. The aim of this study was to evaluate long-term predictors of HR-QoL in dystonia.

Method: 603 isolated dystonia patients (mean age: 55.6 ± 12.5 years, female n=404) were prospectively enrolled in the Dystonia Coalition study, assessed at baseline and after one and two years. HR-QoL (RAND 36-Item Health Survey), severity of depression and GAD (Hospital Anxiety and Depression Scale), and SAD (Liebowitz Social Anxiety Scale) were evaluated. Dystonia severity and dystonic tremor were examined using a standardized video protocol and the Burke-Fahn-Marsden Dystonia Rating Scale. Predictors of HR-QoL were obtained from eight cross-lagged path models (Bonferroni corrected alpha ≤ 0.006) and a latent class growth analysis (LCGA).

Results: Higher depression scores at baseline predicted lower HR-QoL on all eight subscales after two years (all p ≤ .001). Higher anxiety scores at baseline predicted lower QoL related to general health, pain and emotional well-being, whereas higher social anxiety scores predicted higher pain-related QoL after two years (all p≤ 0.006). Dystonia severity at baseline predicted HR-QoL in the context of social functioning (p = 0.002). The presence of dystonic tremor, age and gender did not predict HR-QoL. LCGA revealed two latent classes, distinguished by the HR-QoL that was reported across the three time points. Class 1 (66%) reported a consistently higher level of HR-QoL that was susceptible to depression and SAD, whereas class 2 (34%) reported a consistently lower level of HR-QoL that was susceptible to GAD. There was no relationship between patients’ reports of quality of life in both classes and dystonia severity, age and gender.

Conclusion: The most potent predictors of HR-QoL in isolated dystonia are depression followed by GAD, whereas dystonia motor severity only predicts social functioning. Dystonia patients with higher levels of anxiety have lower HR-QoL than patients with depression and SAD. To improve long-term HR-QoL in dystonia, depression and anxiety should be specifically targeted.

References: 1. Slawek J, Friedman A, Potulska A, et al. Factors affecting the health-related quality of life of patients with cervical dystonia and the impact of botulinum toxin type A injections. Funct Neurol. 2007;22(2):95-100. 2. Lewis L, Butler A, Jahanshahi M. Depression in focal, segmental and generalized dystonia. J Neurol. 2008;255(11):1750-1755. 3. Gundel H, Wolf A, Xidara V, Busch R, Ceballos-Baumann AO. Social phobia in spasmodic torticollis. J Neurol Neurosurg Psychiatry. 2001;71(4):499-504. 4. Kuyper DJ, Parra V, Aerts S, Okun MS, Kluger BM. Nonmotor manifestations of dystonia: a systematic review. Mov Disord. 2011;26(7):1206-1217. 5. Moraru E, Schnider P, Wimmer A, et al. Relation between depression and anxiety in dystonic patients: implications for clinical management. Depress Anxiety. 2002;16(3):100-103. 6. Fabbrini G, Berardelli I, Moretti G, et al. Psychiatric disorders in adult-onset focal dystonia: a case-control study. Mov Disord. 2010;25(4):459-465.

To cite this abstract in AMA style:

J. Junker, J. Hall, B. Berman, M. Vidailhet, E. Roze, I. Malaty, J. Jankovic, S. Reich, A. Espay, N. Patel, J. Perlmutter, H. Jinnah, V. Brandt, N. Brueggemann. Predictors of quality of life in dystonia – a longitudinal study [abstract]. Mov Disord. 2019; 34 (suppl 2). https://www.mdsabstracts.org/abstract/predictors-of-quality-of-life-in-dystonia-a-longitudinal-study/. Accessed June 14, 2025.
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