Objective: To measure the improvement in perceived Quality of Life (QoL) in patients who underwent to DBS placement.

Background: Generalized dystonias are characterized by sustained or intermittent muscle contractions resulting in twisting and abnormal repetitive movements, postures, or both; often initiated or worsened by voluntary action and associated with overflow muscle activation; most forms are idiopathic; however, several have a genetic or acquired background. Dystonias could have a significant impact in the QoL due to limitation of muscular development, disability, pain and emotional impact. Treatment involves drugs, regular botulinum toxin injections and deep brain stimulation (DBS) surgery as a modality for patients with resistant dystonia.

Method: 6 selected patients with generalized dystonia resistant to conservative treatment who underwent DBS surgery and QoL measure with a modified Parkinson’s Disease Questionnaire-8 (PDQ-8), pre and post-surgery.

Results: Demographic information and clinical characteristics of patients are seen on table 1. We performed an evaluation of QoL before (Graphic 1) and after surgery (Graphic 2) and found that majority of patients perceive a subjective improvement in QoL after surgery (27.5%), less than the improvement measured with the PDQ-8 (43%).

Conclusion: Generalized dystonia remains a challenge in diagnosis and treatment. As far as we know, there is no QoL evaluation tool specially designed for this disease, but the PDQ-8 evaluates the QoL related to Parkinson’s Disease and it can be useful in other movement disorders, like generalized dystonias. Evaluation of QoL is important to measure the impact of the disease and try to improve non-motor symptoms of dystonia.

Table 1. Demographic information.

Image 1. PDQ-8 measure before DBS surgery.

Image 2. PDQ-8 measure after DBS surgery.

References: 1. di Biase, L., Di Santo, A., Caminiti, M. L., Pecoraro, P. M., & Di Lazzaro, V. (2022). Classification of dystonia. Life, 12(2), 206.
2. Woo, K. A., Kim, H. J., Jeon, S. H., Park, H. R., Park, K. W., Lee, S. H., … & Jeon, B. (2022). Long-term outcomes of deep brain stimulation in pantothenate kinase-associated neurodegeneration-related dystonia. Journal of Movement Disorders, 15(3), 241.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/quality-of-life-measurement-in-patients-with-generalized-dystonia-who-underwent-deep-brain-stimulation-treatment/