Objective: To investigate patient perspectives on the therapeutic effects of botulinum toxin type-A  (BoNT-A) in cervical dystonia (CD) using patient s on-line survey.

Background: CD is a chronic movement disorder characterized by involuntary contraction of cervical muscle of the neck resulting in twisting and abnormal posture. BoNT-A is today considered standard of care for patients with CD.

Method: The structured on-line questionnaire was distributed to dystonia patients through Dystonia Europe web site (from year 2017-2019), Questionnaire was divided into three parts (I. General questions: name, age etc. II. Specific questions: type of dystonia, diagnosis, disease duration etc. III. Therapy, quality of life, etc.).

Results: A total of 3120 patients completed on-line questionnaire. Of these, 1479 (48%) were CD patients (age 33-74 years), and majority were female (75%). Pain was the most common non-motor symptoms (75%) followed by depression (55%) and anxiety (50%). The most common treatment reported from 961 patients was BoNT-A (65%), followed by oral medication (25%) and physiotherapy (10%). Among patients treated with BoNT-A only 50% were very satisfied, 25% dissatisfied, 25% neutral. Sub-analysis showed that all satisfied patients reported significant reduction in pain. Only 40% reported significant improvement of work ability and social life. But all wanted to continue BoNT therapy.

Conclusion: This survey, involving the highest number of CD patients in EU, highlights that despite the regular BoNT-A treatment dystonia symptoms have significant impact on quality of life, daily activities and working status, But BoNT therapy should be plan in advanced and discuss with neurologist to avoid high expectations and improve the satisfaction of CD patients

Data were presented at 11th EAN Congress, Finland, Helsinki June 21-24th 2025.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patient-perspectives-on-the-therapeutic-effects-of-botulinum-toxin-in-cervical-dystonia/