Centen Liesanne M, Ackermans Linda, Buizer Annemieke I, Contarino M Fiorella, Dijk Joke M, Duits Annelien A, Hoffmann Carel, Kuijf Mark L, Kusnadi Irene, Oterdoom D L Marinus, van de Pol Laura A, Schuurman P Rick, Tijssen Marina A J, van Egmond Martje E
Department of Neurology, University of Groningen, University Medical Center Groningen, Groningen, The Netherlands.
Expertise Center Movement Disorders Groningen, University of Groningen, University Medical Centre Groningen, Groningen, The Netherlands.
Tremor Other Hyperkinet Mov (N Y). 2025 Sep 26;15:47. doi: 10.5334/tohm.1070. eCollection 2025.
Predicting outcome for individuals with dystonia undergoing treatment with deep brain stimulation (DBS) remains challenging. This is further complicated by a lack of uniform screening, follow-up, and heterogeneous outcome measures. This study aims to achieve consensus on a national level among experts in the field to develop an agreed set of outcome measures and introduce more uniformity in the process of preoperative screening and follow-up.
A modified Delphi process was conducted among experts in the field of DBS for dystonia. The process consisted of an inventory round, followed by two rounds of Delphi questionnaires, closing with a digital consensus meeting. Experts rated the importance of items within several categories: ((non-)motor symptoms, selection criteria, follow-up, DBS-related aspects, involved care providers). A threshold of 70% was maintained as consensus criterium.
After the first two rounds, consensus was reached on 40/59 items (adult DBS), and 47/61 items (pediatric DBS). The remaining items were rephrased into 28 statements (13 adult DBS, 13 pediatric DBS, and 2 concerning both) and voted on during a final consensus meeting. There, 23/28 statements (11 adult, 11 pediatric, 1 both) reached consensus. Overall, after three rounds, on most items consensus was reached.
In this Delphi study, a high level of consensus among national experts was achieved on outcome measures and the process of screening and follow-up in DBS for dystonia for adults and children. The results present national consensus and offer an excellent start for collaborative international studies on best practice for DBS in dystonia.
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