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Pain and quality of life in cervical dystonia

L. Herrmann, L. Vorbeck, A. Palisi, A. Maurer, S. Lezius, J. Mallwitz, M. Gelderblom, S. Zittel (Hamburg, Germany)

Meeting: 2023 International Congress

Abstract Number: 801

Keywords: Botulinum toxin: Clinical applications: dystonia, Dystonia: Clinical features, Pain

Category: Dystonia: Epidemiology, Genetics, Phenomenology

Objective: To evaluate different aspects of quality of life (QoL) and pain prevalence, characteristics and influencing factors in patients with cervical dystonia (CD) before and after treatment with botulinum toxin (BoTX) and in comparison to patients with orthopedic cervical pathology.

Background: Pain is a prevalent non-motor symptom of CD and has a major impact on overall QoL. However, the pathophysiology, clinical characteristics and influencing factors are poorly understood, especially since no association with motor symptom severity has been reported.

Method: In a prospective study design, patients with isolated CD were evaluated regarding different aspects of pain, QoL and affect, using a battery of self-report questionnaires and motor symptom severity scored by TWSTRS I. Evaluations were done on the day of BoTX administration, additionally follow-up data was collected after 4-6 weeks at the point of maximum expected clinical effect. CD patients before BoTX treatment were compared to patients with orthopedic cervical conditions.

Results: 49 CD patients (m/f: 17/32) and 49 patients with orthopedic cervical pathology (m/f: 17/32) were included in the study. Mean disease duration in the CD group was 17 (±13) years, in the control group 14 (±14) years. 43 CD patients (86%) reported pain in TWSTRS III and 48 patients (98%) in the control group. Higher pain scores in CD patients were associated with head tremor and female gender but not with motor symptom severity. Follow-up after BoTX treatment showed significant improvement in the TWSTRS pain and motor subscales as well as HADS. Total Craniocervical dystonia questionnaire (CDQ24) scores improved significantly with most improvement in the pain and ADL subscales. In comparison to controls, CD patients scored significantly higher on the CDQ24 stigma subscale, no major differences were noted for other QoL factors, incidence of depression and pain quality determined by PainDETECT score for neuropathic or non-neuropathic pain.

Conclusion: The results underscore the importance of pain as a major non-motor symptom of CD and show that even in our cohort with long disease duration, BoTX treatment has a positive impact not only on motor symptoms, but also on pain and QoL. The remarkably similar results for dystonia patients and orthopedic controls might point towards musculoskeletal rather than central pain as a dominant pain etiology in CD, but further research is needed to elucidate the underlying pathophysiology.

To cite this abstract in AMA style:

L. Herrmann, L. Vorbeck, A. Palisi, A. Maurer, S. Lezius, J. Mallwitz, M. Gelderblom, S. Zittel. Pain and quality of life in cervical dystonia [abstract]. Mov Disord. 2023; 38 (suppl 1). https://www.mdsabstracts.org/abstract/pain-and-quality-of-life-in-cervical-dystonia/. Accessed June 14, 2025.
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