Stigma and quality of life for patients with facial dystonia: a cross-sectional study

Background Facial appearance and expressions influence social interaction. However, few studies have reported on the stigma associated with spasms from facial dystonia. This study investigated the stigma and quality of life for these patients. Methods This cross-sectional study included 90 patients with facial dystonia (hemifacial spasm [HFS], blepharospasm [BSP], and blepharospasm-oromandibular dystonia [BOD]; 30 patients per group) and 30 individuals without dystonia (control group) from October 2019 to November 2020. All participants underwent stigma, quality of life, and mental health evaluations using seven questions related to stigma, the 36-item Short Form Health Survey, the 14-item version of the Hamilton Anxiety Scale (HAMA), and the 24-item version of the Hamilton Depression Scale. Results Nineteen patients (21.11%) felt stigmatized. Patients with BPS and HFS had more difficulty finding a job and were more susceptible to discrimination than healthy individuals. The role-physical and social function scores were significantly lower in the dystonia groups than in the control group. The vitality score of the BPS group and the mental health scores in the BPS and BOD groups were significantly less than those of the control group. The HAMA scores in the BPS and BOD groups were significantly higher than in the control group. Regression analysis demonstrated that the disease course influenced depression. Conclusion Enacted stigma from a negative public attitude may be the main factor triggering stigma in patients with facial dystonia, with detrimental effects on psychosocial outcomes, including social rights, quality of life, and mood.

Long-term Efficacy of GPi DBS for Cranio Facial Dystonia: a Retrospective Report of 13 Cases

Objective: This study evaluated the long-term efficacy of globus pallidus internus (GPi) deep brain stimulation (DBS) in the treatment of Cranio Facial dystonia (Meige syndrome) and investigated the correlation between the volume of tissue activated (VTA) of the GPi and each subregion and movement score improvement.Methods: We retrospectively analyzed the clinical data of 13 patients with drug-refractory Meige syndrome who were treated with GPi DBS. Pre- and postoperative Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) scores were compared. Relationships between preoperative baseline variables and improvement in the BFMDRS-Movement (BFMDRS-M) score were analyzed. LEAD-DBS software was used for three-dimensional reconstruction of the GPi and implanted electrodes. Correlations between the GPi-VTA and score improvement were analyzed.Results: The average follow-up period was 36.6±11.0 months (18-55 months). The improvements in the BFMDRS-M score were 58.2% and 54.6% at 3 months after stimulation and at the final follow-up visit, respectively, and the improvements in the BFMDRS-Disability (BFMDRS-D) score were 53.6% and 51.7%, respectively. At the final follow-up visit, the improvements in BFMDRS-M scores for the eye, mouth, and speech/swallowing were significant (P<0.001). Age was an independent predictor of improvement in the BFMDRS-M score after DBS (P=0.005). A decrease in the BFMDRS-M score had significant positive relationships with the GPi-VTA (r=0.757, P=0.003). Conclusions: GPi DBS is an effective method to treat drug-refractory Meige syndrome. LEAD-DBS software can be used as an effective aid for visualization programing after DBS.