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Results of the German registry of pediatric deep brain stimulation in patients with childhood-onset dyskinetic movement disorders (GEPESTIM)

A. Koy, W. Milena, K.A.M. Pauls, A.A. Kühn, P. Krause, J. Hübl, G.H. Schneider, G. Deuschl, R. Erasmi, D. Falk, J.K. Krauss, G. Lütjens, A. Schnitzler, L. Wojtecki, J. Vesper, R. Korinthenberg, V.A. Coenen, V. Visser-Vandewalle, M. Hellmich, L. Timmermann (Cologne, Germany)

Meeting: 2016 International Congress

Abstract Number: 1724

Keywords: Deep brain stimulation (DBS), Dystonia: Treatment

Session Information

Date: Thursday, June 23, 2016

Session Title: Pediatric movement disorder

Session Time: 12:00pm-1:30pm

Location: Exhibit Hall located in Hall B, Level 2

Objective: We seek to systematically evaluate the clinical outcome of pediatric patients undergoing DBS at different stages of development.

Background: Data on pediatric deep brain stimulation (DBS) is limited, especially for long-term outcomes, because of small numbers in single center series and lack of systematic multi-center trials.

Methods: A German registry on pediatric DBS (GEPESTIM) was created to collect data of patients with dyskinetic movement disorders and deep brain stimulation up to the age of 18 years. Patients were divided into three groups according to etiology (group 1 inherited, group 2 acquired, and group 3 idiopathic).

Results: Data of 44 patients with a mean age of 12.8 years at time of first surgery provided by 6 German centers could be documented in the registry so far (group 1 n=23, group 2 n=16, group 3 n=5). The main target of DBS was the globus pallidus internus (n=35). Average improvement after implantation was 15.5±18.0 points (25.5%) for 27 patients with pre- and postoperative Burke-Fahn-Marsden Dystonia Rating scale movement scores available (p<0.001) (group 1: 21.2±24.8 points, p<0.001, n=15; group 2: 7.0±8.9, n=8; group 3: 13.0±19.4, n=4). Infection was the main reason for hardware removal (n= 6, 13.6%). 20 generator replacements due to battery expiry were necessary in 15 patients after 3.7±1.8 years after last implantation / revision.

Conclusions: Pre- and postoperative data on pediatric DBS are very heterogeneous and incomplete but corroborate the positive effect of DBS of the globus pallidus internus on pediatric inherited and acquired dyskinetic movement disorders. Side effects seem to be a prominent feature of children undergoing DBS, as are relatively frequent replacements of IPGs. These are most likely due to high energy consumption resulting from high stimulation amplitudes. Comprehensive assessment of the effects and standardized treatment algorithms are of eminent importance in the future.

To cite this abstract in AMA style:

A. Koy, W. Milena, K.A.M. Pauls, A.A. Kühn, P. Krause, J. Hübl, G.H. Schneider, G. Deuschl, R. Erasmi, D. Falk, J.K. Krauss, G. Lütjens, A. Schnitzler, L. Wojtecki, J. Vesper, R. Korinthenberg, V.A. Coenen, V. Visser-Vandewalle, M. Hellmich, L. Timmermann. Results of the German registry of pediatric deep brain stimulation in patients with childhood-onset dyskinetic movement disorders (GEPESTIM) [abstract]. Mov Disord. 2016; 31 (suppl 2). https://www.mdsabstracts.org/abstract/results-of-the-german-registry-of-pediatric-deep-brain-stimulation-in-patients-with-childhood-onset-dyskinetic-movement-disorders-gepestim/. Accessed September 25, 2023.
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