Trust the Patient Not the Doctor: The Determinants of Quality of Life in Cervical Dystonia

Abstract

Background: Mood disorder is common in cervical dystonia and can impact on quality of life. It often precedes the onset of cervical dystonia and does not improve with botulinum toxin therapy. Objective: To assess health-related quality of life in relation to mood disorder and measures of severity, disability and pain, in cervical dystonia patients receiving botulinum toxin therapy. Methods: In a single-center, University Hospital movement disorders clinic, we conducted a comprehensive, cross-sectional study of disease severity, non-motor symptoms, mood and health-related quality of life in patients with cervical dystonia receiving botulinum toxin therapy using TWSTRS-2 for pain, severity and disability; Beck Anxiety Inventory and Beck Depression Inventory. We assessed all variables in relation to health-related quality of life assessed by Cervical Dystonia Impact Profile-58 and the Euro-QoL Utility Index. Results: In 201 patients (136 women), mean age 61.5 years, significant determinants of impaired health related quality of life were: being a woman, reporting a history of anxiety or depression, prevalent pain, disability, anxiety and/or depression but not physician-assessed disease severity. Conclusion: Patient-reported measures of pain, disability and, most markedly, mood disorder, are significant factors affecting quality of life; these were totally unrelated to the neurologist-rated measure of disease severity. Mood disorders, the predominant predictor of quality of life, were not addressed in the botulinum toxin clinic.

Keywords: anxiety; cervical dystonia; depression; health-related quality of life; mood disorder; non-motor symptoms.

Figure 1

The prolonged effects of preceding mood disorder in cervical dystonia. Evidence of significant persisting anxiety and depression measured by the Beck Anxiety inventory (BAI) and Beck Depression Inventory (BDI-II) scores, ~18 years after disease onset, in 46 cervical dystonia patients (blue circles) with preceding anxiety/depression compared to 155 with none (pink circles) (bars indicate medians ± inter-quartile intervals).

Figure 2

Correlations with the Cervical Dystonia Impact Profile-58 (CDIP-58) as an index of Quality of Life. Correlations of CDIP-58 with other measures of disease impact in 136 women (pink bars) and 65 men (blue bars) with cervical dystonia. The height of the bars indicates the r-squared relationship between the CDIP-58 Total Scale score and the clinical measure. In women there were significant correlations, surviving multi-variable analysis, between the CDIP-58 with TWSTRS-2 Total, Pain, Disability and Beck Anxiety Inventory (BAI). In men, only the TWSTRS Total and BAI correlations survived multi-variable analysis. [BAI, Beck Anxiety Inventory; BDI-II, Beck Depression Inventory; TWSTRS, Toronto Western Spasmodic Torticollis Rating Scale) (*p < 0.05; **p < 0.01; ***p < 0.001; ****p < 0.0001)].

Figure 3

Correlations with the Utility Index as a measure of Quality of Life. Simple linear regression (r-squared) associations of the Utility Index with other measures of disease impact in 136 women (pink bars) and 65 men (blue bars) with cervical dystonia. The height of the bars indicates the univariate r-squared relationship between the Utility Index and the clinical measure. In 136 women, the TWSTRS-2 Total, TWSTRS-2 Disability subscale, Beck Anxiety Inventory, and Beck Depression Inventory (BDI-II) correlations survived multi-variable analysis. In 65 men there were significant separate correlations, surviving multi-variable analysis, between the Utility Index and the TWSTRS-2 Total, TWSTRS-2 Pain, and Disability subscales and with the Beck Anxiety Inventory (BAI). [TWSTRS, Toronto Western Spasmodic Torticollis Rating Scale; BAI, Beck Anxiety Inventory; BDI-II, Beck Depression Inventory; (*p < 0.05; **p < 0.01; ***p < 0.001.