Background: Subjective symptom complaints often do not match the expert's ratings in focal dystonia. Nonetheless, perceived symptom intensities drive compliance and outcome of botulinum neurotoxin (BoNT) treatment.
Methods: Perception of symptom development across a BoNT cycle was obtained in 21 cervical dystonia (CD) and 15 hemifacial spasm (HFS) patients at four time points during a BoNT cycle. Subjective assessments were recorded by means of a quality-of-life questionnaire and a patient diary containing items related to subjective severity of disease, mood, pain, social impairment, and quality of life. Medical investigation used the Tsui score and TWSTRS, and a HFS rating score, respectively.
Results: In both patient groups, subjective intensities were strongly associated with psychological variables. Only in CD did objective assessment moderately correlate with subjective ratings solely at the beginning and the end of the BoNT cycle. Overall, the beneficial effects of BoNT treatment were only loosely associated with subjective experiences in both groups.
Conclusion: The emotional situation should be assessed regularly in patients undergoing BoNT therapy.
Keywords: botulinum neurotoxin; dystonia; hemifacial spasm; symptom severity rating.
© 2021 The Authors. Brain and Behavior published by Wiley Periodicals LLC.