Liesanne M Centen, Linda Ackermans, Annemieke I Buizer, M Fiorella Contarino, Joke M Dijk, Annelien A Duits, Carel Hoffmann, Mark L Kuijf, Irene Kusnadi, D L Marinus Oterdoom, Laura A van de Pol, P Rick Schuurman, Marina A J Tijssen, Martje E van Egmond
{"title":"Deep Brain Stimulation for Dystonia in the Netherlands: A Delphi Study to Develop National Consensus.","authors":"Liesanne M Centen, Linda Ackermans, Annemieke I Buizer, M Fiorella Contarino, Joke M Dijk, Annelien A Duits, Carel Hoffmann, Mark L Kuijf, Irene Kusnadi, D L Marinus Oterdoom, Laura A van de Pol, P Rick Schuurman, Marina A J Tijssen, Martje E van Egmond","doi":"10.5334/tohm.1070","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>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.</p><p><strong>Methods: </strong>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.</p><p><strong>Results: </strong>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.</p><p><strong>Discussion: </strong>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.</p>","PeriodicalId":23317,"journal":{"name":"Tremor and Other Hyperkinetic Movements","volume":"15 ","pages":"47"},"PeriodicalIF":2.1000,"publicationDate":"2025-09-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12466329/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Tremor and Other Hyperkinetic Movements","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.5334/tohm.1070","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/1/1 0:00:00","PubModel":"eCollection","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Background: 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.
Methods: 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.
Results: 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.
Discussion: 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.