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Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes
Author(s) -
Valadas A.,
Contarino MF.,
Albanese A.,
Bhatia K. P.,
FalupPecurariu C.,
Forsgren L.,
Friedman A.,
Giladi N.,
Hutchinson M.,
Kostic V. S.,
Krauss J. K.,
Lokkegaard A.,
Marti M. J.,
Milanov I.,
Pirtosek Z.,
Relja M.,
Skorvanek M.,
Stamelou M.,
Stepens A.,
Tamás G.,
Taravari A.,
Tzoulis C.,
Vandenberghe W.,
Vidailhet M.,
Ferreira J. J.,
Tijssen M. A.
Publication year - 2016
Publication title -
european journal of neurology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.881
H-Index - 124
eISSN - 1468-1331
pISSN - 1351-5101
DOI - 10.1111/ene.12940
Subject(s) - dystonia , medicine , multidisciplinary approach , deep brain stimulation , physical medicine and rehabilitation , psychiatry , disease , pathology , parkinson's disease , political science , law
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.