Lessons about Botulinum Toxin A Therapy from Cervical Dystonia Patients Drawing the Course of Disease: A Pilot Study

Abstract

Aim of the study: To compare the course of severity of cervical dystonia (CD) before and after long-term botulinum toxin (BoNT) therapy to detect indicators for a good or poor clinical outcome. Patients and Methods: A total of 74 outpatients with idiopathic CD who were continuously treated with BoNT and who had received at least three injections were consecutively recruited. Patients had to draw the course of severity of CD from the onset of symptoms until the onset of BoNT therapy (CoDB graph), and from the onset of BoNT therapy until the day of recruitment (CoDA graph) when they received their last BoNT injection. Mean duration of treatment was 9.6 years. Three main types of CoDB and four main types of CoDA graphs could be distinguished. The demographic and treatment-related data of the patients were extracted from the patients’ charts. Results: The best outcome was observed in those patients who had experienced a clear, rapid response in the beginning. These patients had been treated with the lowest doses and with a low number of BoNT preparation switches. The worst outcome was observed in those 17 patients who had drawn a good initial improvement, followed by a secondary worsening. These secondary nonresponders had been treated with the highest initial and actual doses and with frequent BoNT preparation switches. A total of 12 patients were primary nonresponders and did not experience any improvement at all. No relation between the CoDB and CoDA graphs could be detected. Primary and secondary nonresponses were observed for all three CoDB types. The use of initial high doses as a relevant risk factor for the later development of a secondary nonresponse was confirmed. Conclusions: Patients’ drawings of their course of disease severity helps to easily detect “difficult to treat” primary and secondary nonresponders to BoNT on the one hand, but also to detect “golden responders” on the other hand.

Exploring the Interplay between the Clinical and Presumed Effect of Botulinum Injections for Cervical Dystonia: A Pilot Study

“…This was confirmed by comparing the benefit of BoNT therapy in CD as rated by the treating physicians and the benefit scored by long-term BoNT-treated CD patients drawing the course of disease after the start of BoNT therapy [7]. In summary, both patients and treating physicians agree on the fact that the intramuscular injection of BoNT/A or BoNT/B is an effective treatment for CD that can be performed over years with only mild side effects [7,12].…”

“…Most BoNT-treated CD patients have a high adherence to therapy [4,5] and are satisfied with this treatment [3,6] in principle. Primary non-responders seem to be rare [7].…”

“…The benefit of long-term BoNT therapy rated by CD patients ranges between 0 and 100%, and can be estimated to be about 40 to 60% in the mean [7,12]. Usually, the treating physicians' ratings of the long-term benefit of BoNT/A therapy in CD appear to be higher than patients' ratings [7,13].…”

“…The benefit of long-term BoNT therapy rated by CD patients ranges between 0 and 100%, and can be estimated to be about 40 to 60% in the mean [7,12]. Usually, the treating physicians' ratings of the long-term benefit of BoNT/A therapy in CD appear to be higher than patients' ratings [7,13]. The probable reason is that CD patients suffer from symptoms and aspects of CD that the treating physicians cannot observe directly (for a more detailed discussion, see [13]).…”

No Secondary Treatment Failure during Incobotulinumtoxin—A Long-Term Treatment Demonstrated by the Drawing of Disease Severity

“…We, therefore, developed a method of drawing the course of disease severity (CoD). This method has the advantage of using the patient’s assessment of the clinical efficacy of BoNT therapy, which may add information to the treating physician’s assessment [ 24 , 25 , 26 ]. Furthermore, this drawing test is much cheaper and easier to perform than a laboratory NAB test.…”