Objective: Evaluation of long-term outcome of chronic deep brain stimulation (DBS) for segmental dystonia with an emphasis on quality of life.

Background: DBS has been proven as an effective and safe treatment for medically intractable dystonia. Studies on long term efficacy, however, focused mainly on patients with primary generalized dystonia, and there are almost no data regarding the long term impact of DBS on quality of life.

Methods: In a prospective study design outcome was assessed one and a half years (FU1; range 13-21 months), six years (FU2; range 69-77 months) and ten years (FU3; range 112-160 months) after DBS surgery in thirteen consecutive and regularly followed-up patients with segmental dystonia, using a comprehensive protocol including the Burke-Fahn-Marsden (BFM) motor and disability scores and the SF-36 questionnaire for quality of life. Eleven patients had chronic DBS of the globus pallidus internus (GPi) and two patients of the ventral intermediate (VIM) nucleus of the thalamus. Statistical analysis used non parametric testing for multiple repeated measures (Friedman test with Conover post-hoc analyses).

Results: All patients experienced a sustained improvement in motor symptoms, the mean BFM motor score decreased from 31.4+/-17.8 (mean+/-SD) preoperatively (pre-OP) to 13.5+/-9.4 at FU1, 13.9+/-10.1 at FU2 and 14.6+/-9.4 at FU3 (P<0.01), reflecting a mean improvement between 57.2% at FU1 and 53.6% at FU3. Quality of life as assessed by the SF-36 also improved significantly with DBS (P<0.01). The SF-36 physical health subscore increased from 48.7+/-18.6 pre-OP to 70.2+/-16.3 at FU1, 64.2+/-15.0 at FU2 and 62.4+/-13.7 at FU3 (P<0.01), whereas the SF-36 mental health subscore only temporarily improved (61.3+/-17.5 pre-OP to 76.9+/-8.1 at FU1, 65.5+/-10.0 at FU2 and 61.2+/-14.4 at FU3, P<0.05; post-hoc pre-OP vs. FU3 P=0.44).

Conclusions: Overall, chronic DBS is an effective treatment option for medically refractory segmental dystonia with a sustained long-term improvement of motor symptoms, disability and quality of life in the vast majority of patients. However, in long-term outcome the postoperative amelioration of mental health aspects of quality of life is not sustained, potentially caused by long-ranging changes in patients’ self-perception and illness-related coping.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/physical-but-not-mental-aspects-of-health-related-quality-of-life-are-improved-in-10-year-long-term-follow-up-of-deep-brain-stimulation-for-segmental-dystonia/