Objective: To assess the long term effect of treatment with botulinum neurotoxin (BoNT) in patients with functional jerky or tremorous movement disorders.

Background: Treatment options for functional movement disorders are scarce and not studied extensively. We previously studied the effects of botulinum toxin (BoNT) treatment in a randomized double-blinded clinical trial. 81% of patients improved after 1 year follow-up but there was no significant difference between treatment with BoNT and placebo after 4 months and follow-up. In the current study we aimed to assess the long-term effects of BoNT in functional movement disorders.

Method: An extended follow up study of the BoNT trial was performed, in which 48 patients were approached 3 to 7 years after start of the study. We assessed symptom severity, using the self-reported Clinical Global Impression-Severity (CGI-S) and the Clinical Global Impression-Improvement scale (CGI-I). Physical functioning, work status, psychiatric symptoms, additional treatments and development of other functional neurological symptoms were also studied.

Results: The 46 patients who actively participated in the trial were included in this study. Ten still received BoNT injections, as they experienced an increase of symptoms when the effect of BoNT was supposed to wear off after three months. Of the 36 patients who stopped BoNT treatment after the trial, 21 (61%) patients experienced no change or improvement of motor symptoms since the end of the BoNT trial according to the CGI-I. Most (20 patients) had improved during the original trial. No change was found in motor severity scores since the end of the BoNT trial (p=0,690). Disease burden, anxiety and physical functioning had not improved compared to the start of the original study. The mean of the depression scores had not changed, but it did show a significant difference (p=0,024).

Conclusion: Even after treatment cessation a large proportion of patients improved or retained the improvement in motor symptoms. The effect of treatment-intervention in functional movement disorders appears to create a long-lasting effect of motor symptoms; however this did not translate into improvement of disease burden, disability and quality of life.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/botulinum-neurotoxin-bont-treatment-in-functional-movement-disorders-an-extended-follow-up/