The Effectiveness of Deep Brain Stimulation in Dystonia: A Patient-Centered Approach

Hendriekje Eggink*, Rivka F Toonen, Jonathan C van Zijl, Martje E van Egmond, Anna L Bartels, Rick Brandsma, M Fiorella Contarino, Kathryn J Peall, J Marc C van Dijk, D L Marinus Oterdoom, Martijn Beudel, Marina A J Tijssen

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

5 Citations (Scopus)
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Background: 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.

Methods: Fifteen pediatric and adult dystonia patients (8 male; median age 32y, range 8-65) receiving GPi-DBS were recruited. All patients underwent a multidisciplinary evaluation before and 1-year post DBS implantation. The Canadian Occupational Performance Measure (COPM) first identified and then measured changes in functional priorities. The Burke-Fahn-Marsden Dystonia Rating Scale (BFMDRS) was used to evaluate dystonia severity.

Results: Priorities in daily functioning substantially varied between patients but showed significant improvements 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.

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

Highlights: Functional priorities in life of dystonia patients and their caregivers vary greatlyThe effect of DBS on functional priorities did not correlate with motor outcomeHalf of the motor 'non-responder' patients reported important changes in their prioritiesThe effect of DBS in dystonia should not be measured by motor outcome alone.

Original languageEnglish
Pages (from-to)2
Number of pages1
JournalTremor and other hyperkinetic movements (New York, N.Y.)
Publication statusPublished - 8-Jun-2020


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