Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes

A. Valadas, M. F. Contarino, Alberto Albanese, K. P. Bhatia, C. Falup-Pecurariu, Lars Forsgren, A. Friedman, Nir Giladi, M. Hutchinson, V S Kostic, J. K. Krauss, A. Lokkegaard, Maria J. Marti, I. Milanov, Zvezdan Pirtosek, Maja Relja, M. Skorvanek, Maria Stamelou, A. Stepens, G. TamásA. Taravari, Charalampos Tzoulis, W. Vandenberghe, M. Vidailhet, J. Ferreira, Marina A J Tijssen

Research output: Contribution to journalArticle

Abstract

BACKGROUND AND PURPOSE: Dystonia is difficult to recognize due to its large phenomenological complexity. Thus, the use of experts in dystonia is essential for better recognition and management of dystonia syndromes (DS). Our aim was to document managing strategies, facilities and expertise available in various European countries in order to identify which measures should be implemented to improve the management of DS.

METHODS: A survey was conducted, funded by the Cooperation in Science and Technology, via the management committee of the European network for the study of DS, which is formed from representatives of the 24 countries involved.

RESULTS: Lack of specific training in dystonia by general neurologists, general practitioners as well as other allied health professionals was universal in all countries surveyed. Genetic testing for rare dystonia mutations is not readily available in a significant number of countries and neurophysiological studies are difficult to perform due to a lack of experts in this field of movement disorders. Tetrabenazine is only readily available for treatment of dystonia in half of the surveyed countries. Deep brain stimulation is available in three-quarters of the countries, but other surgical procedures are only available in one-quarter of countries.

CONCLUSIONS: Internationally, collaboration in training, advanced diagnosis, treatment and research of DS and, locally, in each country the creation of multidisciplinary teams for the management of dystonia patients could provide the basis for improving all aspects of dystonia management across Europe.

Original languageEnglish
Pages (from-to)772-9
Number of pages8
JournalEuropean Journal of Neurology
Volume23
Issue number4
DOIs
Publication statusPublished - Apr 2016

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Dystonia
Surveys and Questionnaires
Tetrabenazine
Allied Health Personnel
Deep Brain Stimulation
Movement Disorders
Genetic Testing
General Practitioners
Technology

Keywords

  • Dystonic Disorders
  • European Union
  • General Practitioners
  • Health Care Surveys
  • Humans
  • Neurology
  • Journal Article
  • Research Support, Non-U.S. Gov't

Cite this

Valadas, A., Contarino, M. F., Albanese, A., Bhatia, K. P., Falup-Pecurariu, C., Forsgren, L., ... Tijssen, M. A. J. (2016). Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes. European Journal of Neurology, 23(4), 772-9. https://doi.org/10.1111/ene.12940

Management of dystonia in Europe : a survey of the European network for the study of the dystonia syndromes. / Valadas, A.; Contarino, M. F.; Albanese, Alberto; Bhatia, K. P.; Falup-Pecurariu, C.; Forsgren, Lars; Friedman, A.; Giladi, Nir; Hutchinson, M.; Kostic, V S; Krauss, J. K.; Lokkegaard, A.; Marti, Maria J.; Milanov, I.; Pirtosek, Zvezdan; Relja, Maja; Skorvanek, M.; Stamelou, Maria; Stepens, A.; Tamás, G.; Taravari, A.; Tzoulis, Charalampos; Vandenberghe, W.; Vidailhet, M.; Ferreira, J.; Tijssen, Marina A J.

In: European Journal of Neurology, Vol. 23, No. 4, 04.2016, p. 772-9.

Research output: Contribution to journalArticle

Valadas, A, Contarino, MF, Albanese, A, Bhatia, KP, Falup-Pecurariu, C, Forsgren, L, Friedman, A, Giladi, N, Hutchinson, M, Kostic, VS, Krauss, JK, Lokkegaard, A, Marti, MJ, Milanov, I, Pirtosek, Z, Relja, M, Skorvanek, M, Stamelou, M, Stepens, A, Tamás, G, Taravari, A, Tzoulis, C, Vandenberghe, W, Vidailhet, M, Ferreira, J & Tijssen, MAJ 2016, 'Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes', European Journal of Neurology, vol. 23, no. 4, pp. 772-9. https://doi.org/10.1111/ene.12940
Valadas, A. ; Contarino, M. F. ; Albanese, Alberto ; Bhatia, K. P. ; Falup-Pecurariu, C. ; Forsgren, Lars ; Friedman, A. ; Giladi, Nir ; Hutchinson, M. ; Kostic, V S ; Krauss, J. K. ; Lokkegaard, A. ; Marti, Maria J. ; Milanov, I. ; Pirtosek, Zvezdan ; Relja, Maja ; Skorvanek, M. ; Stamelou, Maria ; Stepens, A. ; Tamás, G. ; Taravari, A. ; Tzoulis, Charalampos ; Vandenberghe, W. ; Vidailhet, M. ; Ferreira, J. ; Tijssen, Marina A J. / Management of dystonia in Europe : a survey of the European network for the study of the dystonia syndromes. In: European Journal of Neurology. 2016 ; Vol. 23, No. 4. pp. 772-9.
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AU - Contarino, M. F.

AU - Albanese, Alberto

AU - Bhatia, K. P.

AU - Falup-Pecurariu, C.

AU - Forsgren, Lars

AU - Friedman, A.

AU - Giladi, Nir

AU - Hutchinson, M.

AU - Kostic, V S

AU - Krauss, J. K.

AU - Lokkegaard, A.

AU - Marti, Maria J.

AU - Milanov, I.

AU - Pirtosek, Zvezdan

AU - Relja, Maja

AU - Skorvanek, M.

AU - Stamelou, Maria

AU - Stepens, A.

AU - Tamás, G.

AU - Taravari, A.

AU - Tzoulis, Charalampos

AU - Vandenberghe, W.

AU - Vidailhet, M.

AU - Ferreira, J.

AU - Tijssen, Marina A J

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N2 - BACKGROUND AND PURPOSE: Dystonia is difficult to recognize due to its large phenomenological complexity. Thus, the use of experts in dystonia is essential for better recognition and management of dystonia syndromes (DS). Our aim was to document managing strategies, facilities and expertise available in various European countries in order to identify which measures should be implemented to improve the management of DS.METHODS: A survey was conducted, funded by the Cooperation in Science and Technology, via the management committee of the European network for the study of DS, which is formed from representatives of the 24 countries involved.RESULTS: Lack of specific training in dystonia by general neurologists, general practitioners as well as other allied health professionals was universal in all countries surveyed. Genetic testing for rare dystonia mutations is not readily available in a significant number of countries and neurophysiological studies are difficult to perform due to a lack of experts in this field of movement disorders. Tetrabenazine is only readily available for treatment of dystonia in half of the surveyed countries. Deep brain stimulation is available in three-quarters of the countries, but other surgical procedures are only available in one-quarter of countries.CONCLUSIONS: Internationally, collaboration in training, advanced diagnosis, treatment and research of DS and, locally, in each country the creation of multidisciplinary teams for the management of dystonia patients could provide the basis for improving all aspects of dystonia management across Europe.

AB - BACKGROUND AND PURPOSE: Dystonia is difficult to recognize due to its large phenomenological complexity. Thus, the use of experts in dystonia is essential for better recognition and management of dystonia syndromes (DS). Our aim was to document managing strategies, facilities and expertise available in various European countries in order to identify which measures should be implemented to improve the management of DS.METHODS: A survey was conducted, funded by the Cooperation in Science and Technology, via the management committee of the European network for the study of DS, which is formed from representatives of the 24 countries involved.RESULTS: Lack of specific training in dystonia by general neurologists, general practitioners as well as other allied health professionals was universal in all countries surveyed. Genetic testing for rare dystonia mutations is not readily available in a significant number of countries and neurophysiological studies are difficult to perform due to a lack of experts in this field of movement disorders. Tetrabenazine is only readily available for treatment of dystonia in half of the surveyed countries. Deep brain stimulation is available in three-quarters of the countries, but other surgical procedures are only available in one-quarter of countries.CONCLUSIONS: Internationally, collaboration in training, advanced diagnosis, treatment and research of DS and, locally, in each country the creation of multidisciplinary teams for the management of dystonia patients could provide the basis for improving all aspects of dystonia management across Europe.

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KW - Health Care Surveys

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KW - Journal Article

KW - Research Support, Non-U.S. Gov't

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JO - European Journal of Neurology

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