Background: Differential effects of botulinum toxin (BoNT) treatment in cervical dystonia (CD) and blepharospasm (BSP) treatment satisfaction and emotional responses to a life with a disabling condition were investigated. Special interest was drawn to the course within a BoNT treatment cycle and the effects of subjective well-being vs perceived intensity of motor symptoms and quality of life.
Methods: A questionnaire was distributed among 372 CD patients and 125 BSP patients, recruited from 13 BoNT centers throughout Germany. Items were related to dystonic symptoms, BoNT treatment responses and treatment satisfaction, quality of life, working situation, and emotional reactions to a life with dystonia.
Results: CD patients and BSP patients were widely satisfied with BoNT treatment, but treatment satisfaction worsened significantly within the treatment cycle. Especially CD patients reported that both the dystonic symptoms and the effects of BoNT treatment were influenced by emotional factors. Despite good overall treatment effects, patients from both groups perceived marked persistence of motor symptoms, restrictions of everyday life functions, and reduced quality of life. Functional amelioration of motor symptoms and emotional well-being were only moderately correlated. About 22% of patients from both groups reported mental disorders or emotional disturbances prior to the onset of dystonia.
Conclusion: As numerous psychological factors determine perceived outcome, BoNT treatment should be further improved by patient's education strategies enhancing behavioral self-control. From the patient's perspective, individual intervals, which may avoid exacerbation between injection points, should be considered. Moreover, patients at risk, with reduced adherence and poor BoNT outcome, should be identified and addressed within psychoeducation.
Keywords: adherence; blepharospasm; botulinum toxin; cervical dystonia; treatment satisfaction.