The course of cervical dystonia and patient satisfaction with long-term botulinum toxin A treatment

In 78 patients with idiopathic cervical dystonia (CD), we studied the course of the disease and the patients' satisfaction with long-term botulinum toxin A (BTX) treatment (median 5.5 years, range 1.5-10). On a seven-point scale ranging from excellent to worsening, the effect of treatment was scored as excellent or good by 52% of patients and moderate by 33%. The independent scores of the treating neurologists were excellent or good in 65% and moderate in 27%, respectively, and correlated well with the patients' scores. The 'Global Burden of Disease', as expressed on Visual Analog Scales (VAS, 0-10) before and at evaluation of treatment, was reduced by a median of 4 in individual patients. By combining these outcome measures, 67% of the patients were characterized as having a good effect, and 33% an unsatisfactory effect. This outcome (good or unsatisfactory effect) was independent of the severity of head deviation or complexity pattern of CD prior to treatment, the delay from onset to start of BTX treatment, or the number of treatments. The complexity pattern remained stable during treatment in 64% of the patients, became less complex in 19%, whereas 17% of the patients developed more complex patterns.