Abstract
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.
Acknowledgments
The authors thank Mareike Thomas, student research assistant, for proof reading and compilation of the literature. Editing was supported by Anastasia Byler, PsychEdit Services, USA. This investigation was supported by Merz Pharmaceuticals.
Disclosure
The corresponding author (BL) was a consultant of Merz Pharmaceuticals for this investigation. In 2009, he was a consultant of Medtronic. He is an unsalaried member of the boards of the German Patient’s Organisation for Parkinson’s Disease (dPV), the German Society of Dystonia (DDG), and the German Society of Torticollis. For data collection and data analysis, JP was a salaried research assistant at Martin-Luther-University Halle-Wittenberg, Germany, sponsored by Merz Pharmaceuticals; AE was a student research assistant responsible for data preparation and salaried by Merz pharmaceuticals. The authors report no other conflicts of interest in this work.