Objective: To systematically evaluate the effectiveness of deep brain stimulation of the Globus Pallidus internus (GPi-DBS) in dystonia on pre-operatively set functional priorities in daily living.

Background: The effect of GPi-DBS has been predominantly measured with objective standardized dystonia rating scales. It is however unclear how dystonia severity reflects disease burden and whether a reduction in symptoms correlates with meaningful improvements in functioning.

Methods: Fifteen pediatric and adult dystonia patients (8 male; median age 32y, range 8-65; disease duration 8y, range 3-47) receiving GPi-DBS between 2013 and 2016 were consecutively and prospectively recruited. All patients underwent a multidisciplinary evaluation before and 1-year post DBS implantation. The Canadian Occupational Performance Measure (COPM) was used to first identify and then measure changes in functional priorities and measure changes in and the Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) used to evaluate dystonia severity. A comparison was made between pre- and post-operative scores.

Results: Priorities in daily functioning substantially varied across domains between patients but showed significant improvement on performance and satisfaction after DBS. Clinically significant COPM-score improvements were present in 7/8 motor responders, but also in 4/7 motor non-responders.

Conclusions: The use of a patient-oriented approach to measure the effect of GPi-DBS in dystonia provides an unique insight in the priorities of patients and their caregivers and demonstrates that tangible improvements can be achieved irrespective of motor response.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-effectiveness-of-deep-brain-stimulation-in-dystonia-a-patient-centered-approach/