Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes
Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes
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DOI：
10.1111/ene.12940
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发表时间：
2016-04-01
影响因子：
5.1
通讯作者：
Tijssen, M. A.
中科院分区：
文献类型：
--
作者：
Valadas, A.;Contarino, M-F.;Tijssen, M. A.
背景与目的肌张力障碍由于其巨大的现象学复杂性而难以识别。因此，使用专家在肌张力障碍是必不可少的，以更好地识别和管理肌张力障碍综合征（DS）。我们的目的是记录欧洲各国现有的管理战略、设施和专门知识，以便确定应该实施哪些措施来改善DS的管理。方法由科学技术合作组织资助，由24个国家的代表组成的欧洲DS研究网络管理委员会进行了一项调查。结果全科医生、全科医生和其他专职卫生专业人员对肌张力障碍的专项培训在所有被调查国家都是普遍的。在许多国家，罕见的肌张力障碍突变的基因检测并不容易获得，而且由于缺乏这一运动障碍领域的专家，神经生理学研究很难进行。在接受调查的半数国家中，四苯那嗪仅可用于治疗肌张力障碍。在四分之三的国家有深部脑刺激，但只有四分之一的国家有其他外科手术。在国际上，在培训、先进的诊断、治疗和研究方面的合作，以及在每个国家建立多学科团队来管理肌张力障碍患者，可以为改善整个欧洲肌张力障碍管理的各个方面提供基础。
Background and purposeDystonia 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.MethodsA 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.ResultsLack 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.ConclusionsInternationally, 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.