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Deep Brain Stimulation for Dystonia in the Netherlands: A Delphi Study to Develop National Consensus Cover

Deep Brain Stimulation for Dystonia in the Netherlands: A Delphi Study to Develop National Consensus

Tremor and Other Hyperkinetic Movements
Volume 15 (2025): Issue 1
By: Liesanne M. CentenORCID,  Linda Ackermans,  Annemieke I. BuizerORCID,  M. Fiorella ContarinoORCID,  Joke M. DijkORCID,  Annelien A. DuitsORCID,  Carel Hoffmann,  Mark L. KuijfORCID,  Irene Kusnadi,  D. L. Marinus OterdoomORCID,  Laura A. van de PolORCID,  P. Rick SchuurmanORCID,  Marina A. J. TijssenORCID and  Martje E. van EgmondORCID  
Open Access
|Sep 2025

References

  1. 1Albanese A, Bhatia K, Bressman SB, et al. Phenomenology and classification of dystonia: a consensus update. Mov Disord. 2013;28(7):863–873. DOI: 10.1002/mds.25475
    Back to article
  2. 2Rodrigues FB, Duarte GS, Prescott D, et al. Deep brain stimulation for dystonia. Cochrane Database Syst Rev. 2019;1:CD012405. DOI: 10.1002/14651858.CD012405.pub2
    Back to article
  3. 3Kupsch A, Benecke R, Müller J, et al. Pallidal deep-brain stimulation in primary generalized or segmental dystonia. New England Journal of Medicine. 2006;355(19):1978–1990. DOI: 10.1056/NEJMoa063618
    Back to article
  4. 4Tisch S. Deep brain stimulation in dystonia: factors contributing to variability in outcome in short and long term follow-up. Current opinion in neurology. 2022;35(4):510–517. DOI: 10.1097/WCO.0000000000001072
    Back to article
  5. 5Eltahawy HA, Saint-Cyr J, Giladi N, Lang AE, Lozano AM. Primary Dystonia Is More Responsive than Secondary Dystonia to Pallidal Interventions: Outcome after Pallidotomy or Pallidal Deep Brain Stimulation. Neurosurgery. 2004 Mar;1;54(3):613–21. DOI: 10.1227/01.NEU.0000108643.94730.21
    Back to article
  6. 6Vidailhet M, Vercueil L, Houeto JL, Krystkowiak P, Benabid AL, Cornu P, et al. Bilateral Deep-Brain Stimulation of the Globus Pallidus in Primary Generalized Dystonia. New England Journal of Medicine. 2005 Feb 3;352(5):459–67. DOI: 10.1056/NEJMoa042187
    Back to article
  7. 7Limotai N, Go C, Oyama G, Hwynn N, Zesiewicz T, Foote K, et al. Mixed results for GPi-DBS in the treatment of cranio-facial and cranio-cervical dystonia symptoms. Journal of Neurology. 2011 Nov;258(11):2069–74. Available from: https://pubmed.ncbi.nlm.nih.gov/21553081/
    Back to article
  8. 8Lin SS, Shu Y, Zhang C, Wang L, Huang P, Pan Y, et al. Globus pallidus internus versus subthalamic nucleus deep brain stimulation for isolated dystonia: A 3-year follow-up. European Journal of Neurology. 2023 Jun 13;30(9):2629–40. DOI: 10.1111/ene.15895
    Back to article
  9. 9Horn A, Reich MM, Ewert S, et al. Optimal deep brain stimulation sites and networks for cervical vs. generalized dystonia. Proc Natl Acad Sci U S A. 2022;119(14):e2114985119. DOI: 10.1073/pnas.2114985119
    Back to article
  10. 10Gimeno H, Tustin K, Lumsden D, et al. Evaluation of functional goal outcomes using the Canadian Occupational Performance Measure (COPM) following Deep Brain Stimulation (DBS) in childhood dystonia. European journal of paediatric neurology: EJPN: official journal of the European Paediatric Neurology Society. 2014;18(3):308–316. DOI: 10.1016/j.ejpn.2013.12.010
    Back to article
  11. 11Ministerie van Volksgezondheid, Welzijn en Sport. Expert opinie over de benodigde behandelcapaciteit voor DBS in de periode 2019–2030; Juni 2019. Available from: blg-895211.pdf (officielebekendmakingen.nl)
    Back to article
  12. 12Brown BB. Delphi process: A Methodology used for the elicitation of opinions of experts. Dtic.mil; 1968. Available from: https://apps.dtic.mil/sti/html/tr/AD0675981/index.htmlPA
    Back to article
  13. 13Harris PA, Taylor R, Minor BL, et al. REDCap Consortium, The REDCap consortium: Building an international community of software partners. J Biomed Inform. 2019 May;9. DOI: 10.1016/j.jbi.2019.103208
    Back to article
  14. 14Chyung SY, Roberts K, Swanson I, Hankinson A. Evidence-Based Survey Design: The Use of a Midpoint on the Likert Scale. Performance Improvement. 2017;56(10):15–23. DOI: 10.1002/pfi.21727
    Back to article
  15. 15Nasa P, Jain R, Juneja D. Delphi methodology in healthcare research: How to decide its appropriateness. World J Methodol. 2021;11(4):116–129. DOI: 10.5662/wjm.v11.i4.116
    Back to article
  16. 16Okoli C, Pawlowski SD. The Delphi method as a research tool: an example, design considerations and applications. Information & Management.
    Back to article
  17. 17Eggink H, Szlufik S, Coenen MA, van Egmond ME, Moro E, Tijssen MAJ. Non-motor effects of deep brain stimulation in dystonia: A systematic review. Parkinsonism & related disorders. 2018;55:26–44. DOI: 10.1016/j.parkreldis.2018.06.024
    Back to article
  18. 18Listik C, Cury RG, Casagrande SCB, et al. Improvement of Non-motor Symptoms and Quality of Life After Deep Brain Stimulation for Refractory Dystonia: A 1-Year Follow-Up. Frontiers in neurology. 2021;12:717239. DOI: 10.3389/fneur.2021.717239
    Back to article
  19. 19Burke RE, Fahn S, Marsden CD, Bressman SB, Moskowitz C, Friedman J. Validity and reliability of a rating scale for the primary torsion dystonias. Neurology. 1985 Jan 1.35(1):73–3. DOI: 10.1212/WNL.35.1.73
    Back to article
  20. 20Consky ES, Lang AE. Clinical assessments of patients with cervical dystonia. In: Jancovic J, Hallett M. editors. Therapy with botulinum toxin. New York: Marcel Dekker; 1994. pp. 211–237.
    Back to article
  21. 21Tarsy D. Comparison of clinical rating scales in treatment of cervical dystonia with botulinum toxin. Movement Disorders. 1997 Jan;12(1):100–2. DOI: 10.1002/mds.870120117
    Back to article
  22. 22Tsui JK, Eisen A, Stoessl AJ, Calne S, Calne DB. Double-blind study of botulinum toxin in spasmodic torticollis. Lancet. 1986 Aug 2;2(8501):245–7. DOI: 10.1016/S0140-6736(86)92070-2
    Back to article
  23. 23Vanegas MI, Marcé-Grau A, Martí-Sánchez L, Mellid S, Baide-Mairena H, Correa-Vela M, et al. Delineating the motor phenotype of SGCE-myoclonus dystonia syndrome. Parkinsonism & related disorders. 2020 Nov;80:165–74. DOI: 10.1016/j.parkreldis.2020.09.023
    Back to article
  24. 24Frucht SJ, Leurgans SE, Hallett M, Fahn S. The Unified Myoclonus Rating Scale. Advances in neurology. 2002;89:361–76. PMID: 11968461.
    Back to article
  25. 25Comella CL, Leurgans S, Wuu J, Stebbins GT, Chmura T; The Dystonia Study Group. Rating scales for dystonia: a multicenter assessment. Mov Disord. 2003 Mar;18(3):303–312. PMID: 12621634. DOI: 10.1002/mds.10377
    Back to article
  26. 26Kuiper MJ, Vrijenhoek L, Brandsma R, Lunsing RJ, Burger H, Eggink H, et al. The Burke-Fahn-Marsden Dystonia Rating Scale is Age-Dependent in Healthy Children. Movement Disorders Clinical Practice. 2016 May 3;3(6):580–6. DOI: 10.1002/mdc3.12339
    Back to article
  27. 27Mink JW. Special concerns in defining, studying, and treating dystonia in children. Movement Disorders. 2013 Jun 15;28(7):921–5. DOI: 10.1002/mds.25548
    Back to article
  28. 28Burke RE, Fahn S, Marsden CD. Torsion dystonia: A double-blind, prospective trial of high-dosage trihexyphenidyl. Neurology. 1986 Feb 1;36(2):160–0. DOI: 10.1212/WNL.36.2.160
    Back to article
  29. 29Monbaliu E, Ortibus E, Roelens F, Desloovere K, Deklerck J, Prinzie P, et al. Rating scales for dystonia in cerebral palsy: reliability and validity. Developmental Medicine & Child Neurology. 2010 Jan 28;52(6):570–5. DOI: 10.1111/j.1469-8749.2009.03581.x
    Back to article
  30. 30Danielsson A, Vanmechelen I, Lidbeck C, Krumlinde-Sundholm L, Ortibus E, Monbaliu E, Tedroff K. Reliability and Validity of the Dyskinesia Impairment Scale in Children and Young Adults with Inherited or Idiopathic Dystonia. Journal of clinical medicine. 2020;9(8):2597. DOI: 10.3390/jcm9082597
    Back to article
  31. 31Monbaliu E, Ortibus E, De Cat J, Dan B, Heyrman L, Prinzie P, De Cock P, Feys H. The Dyskinesia Impairment Scale: a new instrument to measure dystonia and choreoathetosis in dyskinetic cerebral palsy. Developmental medicine and child neurology. 2012;54(3):278–283. DOI: 10.1111/j.1469-8749.2011.04209.x
    Back to article
DOI: https://doi.org/10.5334/tohm.1070 | Journal eISSN: 2160-8288
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Language: English
Submitted on: Jun 25, 2025
Accepted on: Sep 12, 2025
Published on: Sep 26, 2025
Published by: Ubiquity Press
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year
Keywords:
Dystonia,
treatment,
deep brain stimulation,
Delphi study

© 2025 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, published by Ubiquity Press
This work is licensed under the Creative Commons Attribution 4.0 License.

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