Objective: To explore how perception of disease can impact stigma, mood, quality of life, and severity of symptoms in patients with cervical dystonia (CD).

Background: Non-motor symptoms of dystonia include disturbances to mood, sleep, and cognition, along with problems with interpersonal relationships and employment [2][3]. Studies have shown that mood disturbances have a large impact on quality of life (QoL) [3]. Stigma and self-perception of disease is an underexplored area in patients with CD.

Method: Patients with CD (N=26) currently receiving botulinum toxin therapy (BoNT) completed Beck’s Depression Inventory (BDI), Beck’s Anxiety Inventory (BAI), Perception of Dystonia Scale, Cervical Dystonia Impact Profile (CDIP-58), and Craniocervical Dystonia Questionnaire (CDQ-24). Demographic information was obtained via chart review. A videotaped examination was completed to assess motor severity, which was scored by blinded raters according to the Toronto Western Spasmodic Torticollis Rating Scale – severity (TWSTRS). Data was analyzed using Pearson’s correlation test.

Results: Demographically, 20 out of 26 were female, average age of our participants was 65.8 years, with an average duration of symptoms of 9.2 years and all the patients received BoNT type A injections. There was a statistically significant correlation with impairment of activities of daily living (ADLs) and combined stigma, emotional well-being, and social/family life (p<0.001). Higher stigma scores significantly correlated with more disease impact, related to mobility, physical symptoms, and limitations in ADLs (p=0.004), along with higher anxiety (p=0.005) and depression scores (p=0.009). Improvement experienced from BoNT had no significant correlation with stigma, depression scores, or disease impact. Higher TWSTRS scores were not correlated with increased depression, stigma, or disease impact. Due to the exploratory nature of our study, we did not correct for multiple comparisons.

Conclusion: Motor severity is not associated with worsened QoL. Instead, increased self-stigma and inability to carry out ADLs are associated with more impairment in QoL scores. These results suggest that further research is needed to explore how to mitigate stigmatization in dystonia. A second phase of this study is currently underway to explore public perception of dystonia, and how educational interventions may reduce stigma and improve overall quality of life for patients living with CD.

References: 1. Bajenaru OL, Popescu-Olaru I, Dumitrescu L, et al. Non-Motor Manifestations in Idiopathic Dystonia with Focal Onset – A Pilot Study. J Med Life. 2020;13(2):170-174.
2. Ray S, Pal PK, Yadav R. Non-Motor Symptoms in Cervical Dystonia: A Review. Ann Indian Acad Neurol. 2020;23(4):449-457.
3. Klingelhoefer, L., Kaiser, M., Sauerbier, A., Untucht, R., Wienecke, M., Mammadova, K., Falkenburger, B., Gregor, O., Chaudhuri, K. R., & Reichmann, H. (2021). Emotional well-being and pain could be a greater determinant of quality of life compared to motor severity in cervical dystonia. Journal of neural transmission (Vienna, Austria : 1996), 128(3), 305–314. https://doi.org/10.1007/s00702-020-02274-z

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MDS Abstracts - https://www.mdsabstracts.org/abstract/perceptions-of-diseases-in-patients-with-cervical-dystonia/