Abstract
Purpose :
We present data of patients with craniocervical dystonia (CCD) attending botulinum toxin clinics at the university hospital in Dresden. Aim was to evaluate patients` satisfaction dependent of motor and non-motor symptoms (NMS).
Methods :
In this prospective study, we applied validated motor scales (UDRS), established non-motor/quality of life questionnaires (CDQ-24, EQ.5D) and the clinical global impression of severity (CGIS) as well as a self-rating about subjective impairment and satisfaction dependent of the dystonia as well as of the botulinum toxin treatment in CCD patients.
Results :
A total of 42 patients with CCD (cervical dystonia:27 patients, cranial dystonia:15 patients); 62.3±14.9 years old (mean±standard deviation); 14.9±11.7 years of disease duration, were assessed. Severity of motor dystonia assessed with UDRS was 8.5±3.7 and CGIS had a median score of 4.0 corresponding to patients being “moderately ill“ (interquartile range 3 to 5). Quality of life measured by CDQ-24 was 27.2±14.9 with the domain “activities of daily live” (ADL) being most impaired, followed by the domain “stigma”, “emotional well being” and “pain”. Patients received treatment with botulinum toxin for a mean of 11.7±8.6 years, reported a positive effect for 9.4±3.1 weeks after injection and received a mean of 535 botulinum toxin units. Effectiveness of botulinum toxin was rated by the patients to be strong in general, to be strong on motor symptoms and to be moderate on NMS. We found a moderate to high correlation of the CGIS with motor severity measured by UDRS, subjective impairment in ADLs, effectiveness of botulinum toxin treatment on motor symptoms (rs=|0.34-0.73|, p<0.05) but not on NMS of dystonia (rs=0.11, p>0.05).
Conclusions :
NMS are evident in patients with CCD and are partly reported by CDQ-24. They are often under-recognised and not always linked to the dystonia by both the physicians as well as the patients. In a representative population of CCD patients we determined satisfaction of patients with botulinum toxin treatment in general as well as the effect on motor symptoms. The effectiveness of botulinum toxin on NMS was rated to be moderate by the patients but as no correlation with CGIS could be found, the effect on NMS remains unclear. One reason might be too little awareness for NMS in the context of routine clinical consultations of patients with focal dystonia.
This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.