Objective: In this study we want to see patients’ perception about deep brain stimulation (DBS) and the hardest symptoms perceived by patients with generalized dystonia (GD) before and 6 months after DBS.

Background: The modern management of dystonia is patient oriented.  Patients have a lot of motor and non-motor symptoms but their perceptions of the hardest and the most troublesome symptoms mostly differ from the doctor’s view.  If we want to manage them effectively, we must focus on patients’ perspective.

Method: We asked 25 patients before and 6 months after that came to our Centre to write their three most troublesome and the hardest symptoms and problems and their intensity (from 1 to 10) in last 6 months. We asked them about meaning of DBS to them, adaptation period and willing to do it again. Also, we collected all other demographic data about them and scores of Burke‐Fahn‐Marsden Dystonia Rating Scale (BFMDRS), Functional Independence Measure (FIM), Quality of life (QoL) scale before and 6 months after DBS.

Results: Mean age was 26.09±0.9 (man 52%; women 48%). Mean disease duration was 15.5±0.6. Mean improvement of BFMDRS was 70%, of FIM 80% and QoL 45%. Before DBS the most troublesome symptoms and problems were: gait (80%, intensity 9/10), speech problems (65%, intensity 7/10), socializing (90%, 7/10), public appearance (90%, 8/10), tremor (33.3%, 6/10) swallow (65%, 6/10), pain (70%, 9/10), anxiety (55%, 6/10), spasms (95%, 10/10), neck distortion (89%, 9/10). Six months after DBS the most troublesome symptoms and problems were gait (26.2%, intensity 2/10), fear of malfunctioning of DBS (30%, 5/10), fear of returning of dystonia symptoms (28%, 4/10), speech problems (10%, intensity 2/10), spasms (25%, 2/10), anxiety (23%, 2/10), public appearance (20%, 2/10). 95% patients said that now their life is unthinkable without DBS. 100% said that they will do DBS operation again, 100 % said they are much better, and 85 % that they were without any problems in adaptations and new chance and role in life.

Conclusion: From patients’ perspective DBS is the greatest thing that happened and the adaptation was easy to new, better functioning in their life. The hardest symptoms and problems in GD patients were different before and 6 months after DBS.  We must pay more attention to assess and control non-motor symptoms and psycho-social factors after DBS because they may impact patients’ quality of life.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/patients-perception-of-deep-brain-stimulation-in-generalized-dystonia/