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

Valadas, Anabela; Contarino, Maria Fiorella; Albanese, Alberto; Bhatia, Kailash P.; Falup‐Pecurariu, Cristian; Forsgren, Lars; Friedman, Andrzej; Giladi, Nir; Hutchinson, Michael; Kostić, Vladimir; Krauss, Joachim K.; Løkkegaard, Annemette; Martı́, Marı́a José; Milanov, Ivan; Pirtošek, Zvezdan; Relja, Maja; Škorvánek, Matej; Stamelou, María; Stepens, Ainārs; Tamás, Gertrúd; Taravari, Arben; Tzoulis, Charalampos; Vandenberghe, Wim; Vidailhet, Marie; Ferreira, Joaquim J.; Tijssen, Marina A. J.

doi:10.1111/ene.12940

Cited by 10 publications

(20 citation statements)

References 7 publications

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“…Regarding botulinum toxin in group 1‐DYS, the results were similar to those indicated in the paper published by Valadas et al . in 2016 [5]. This treatment was accessible in all countries but in 30.8% with some difficulties, mainly related to financial issues like reimbursement.…”

Section: Discussionmentioning

confidence: 99%

Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases

Painous

Delamarre

et al. 2020

Euro J of Neurology

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Background and purpose The diagnosis of rare movement disorders is difficult and specific management programmes are not well defined. Thus, in order to capture and assess care needs, the European Reference Network for Rare Neurological Diseases has performed an explorative care need survey across all European Union (EU) countries. Methods This is a multicentre, cross‐sectional study. A survey about the management of different rare movement disorders (group 1, dystonia, paroxysmal dyskinesia and neurodegeneration with brain iron accumulation; group 2, ataxias and hereditary spastic paraparesis; group 3, atypical parkinsonism; group 4, choreas) was sent to an expert in each group of disorders from each EU country. Results Some EU countries claimed for an increase of teaching courses. Genetic testing was not readily available in a significant number of countries. Regarding management, patients’ accessibility to tertiary hospitals, to experts and to multidisciplinary teams was unequal between countries and groups of diseases. The availability of therapeutic options, such as botulinum toxin or more invasive treatments like deep brain stimulation, was limited in some countries. Conclusions The management of these conditions in EU countries is unequal. The survey provides evidence that a European care‐focused network that is able to address the unmet rare neurological disease care needs and inequalities is highly warranted.

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Section: Discussionmentioning

confidence: 99%

Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases

Painous

Delamarre

et al. 2020

Euro J of Neurology

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“…Therefore, specific recommendations for clinical applications are premature. However, patient report and promising findings by some well‐designed studies invite further investigation. Intensive movement practice and neuromodulation combined with motor training for rehabilitation of cervical and hand dystonias have the strongest level of evidence and should be further explored.…”

Section: Discussionmentioning

confidence: 98%

“…In the United States, few therapists regularly see patients with dystonia in their clinical practice. In a survey in 24 European countries, rehabilitation was easily accessible in only half of the countries surveyed . In Sweden, where physical therapy is more commonly used in the management of cervical dystonia, it is the second most effective intervention after BoNT according to patients .…”

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confidence: 99%

Systematic Review of Rehabilitation in Focal Dystonias: Classification and Recommendations

Prudente

Zetterberg

Bring

et al. 2018

Movement Disord Clin Pract

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BackgroundRehabilitation interventions are rarely utilized as an alternative or adjunct therapy for focal dystonias. Reasons for limited utilization are unknown, but lack of conclusive evidence of effectiveness is likely a crucial factor.Methods and FindingsThe purpose of this systematic review was to determine the level of evidence for rehabilitation interventions in focal dystonias. Rehabilitation interventions were classified based upon the underlying theoretical basis of different approaches, and the strength of evidence for each category was evaluated to identify gaps in the field. Prospective studies using rehabilitation methods in cervical, hand, and foot dystonia were reviewed. The key elements of treatments tested were identified and studies were grouped into six categories based on the theoretical basis of the intervention: (1) movement practice, (2) training with constraint, (3) sensory reorganization, (4) normalization of muscle activity with external techniques, (5) neuromodulation with training, and (6) compensatory strategies. Quality of the body of evidence ranged from very low‐to‐low according to the grades of recommendation, assessment, development, and evaluation (GRADE). Despite inconclusive evidence for these rehabilitation approaches, data suggest that intensive movement practice and neuromodulation combined with motor training should be further explored.ConclusionsThis systematic review presents a novel approach to classify studies of rehabilitation in focal dystonias based on the theoretical basis of intervention. The proposed classification system will move toward a unified theoretical understanding of rehabilitation interventions in dystonia. Moreover, it will help provide recommendations for clinical applications and future investigations.

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“…The geographical distribution of such centers is not uniform across Europe: some countries have no center at all ( 15 ), and some DBS centers do not treat dystonia patients or have a low volume of surgeries due to the lack of resources or qualified personnel. As a result, patients in some areas currently do not have access to this effective treatment ( 103 ) (for a patient's experience, see Box 7 ).…”

Section: Treatment Challengesmentioning

confidence: 99%

Dystonia Management: What to Expect From the Future? The Perspectives of Patients and Clinicians Within DystoniaNet Europe

Smit

Albanese²,

Benson³

et al. 2021

Front. Neurol.

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Improved care for people with dystonia presents a number of challenges. Major gaps in knowledge exist with regard to how to optimize the diagnostic process, how to leverage discoveries in pathophysiology into biomarkers, and how to develop an evidence base for current and novel treatments. These challenges are made greater by the realization of the wide spectrum of symptoms and difficulties faced by people with dystonia, which go well-beyond motor symptoms. A network of clinicians, scientists, and patients could provide resources to facilitate information exchange at different levels, share mutual experiences, and support each other's innovative projects. In the past, collaborative initiatives have been launched, including the American Dystonia Coalition, the European Cooperation in Science and Technology (COST—which however only existed for a limited time), and the Dutch DystonieNet project. The European Reference Network on Rare Neurological Diseases includes dystonia among other rare conditions affecting the central nervous system in a dedicated stream. Currently, we aim to broaden the scope of these initiatives to a comprehensive European level by further expanding the DystoniaNet network, in close collaboration with the ERN-RND. In line with the ERN-RND, the mission of DystoniaNet Europe is to improve care and quality of life for people with dystonia by, among other endeavors, facilitating access to specialized care, overcoming the disparity in education of medical professionals, and serving as a solid platform to foster international clinical and research collaborations. In this review, both professionals within the dystonia field and patients and caregivers representing Dystonia Europe highlight important unsolved issues and promising new strategies and the role that a European network can play in activating them.

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

Abstract: 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.

Cited by 10 publications

References 7 publications

Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases

Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases

Systematic Review of Rehabilitation in Focal Dystonias: Classification and Recommendations

Dystonia Management: What to Expect From the Future? The Perspectives of Patients and Clinicians Within DystoniaNet Europe

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