Objective: To investigate management of dystonia in Europe from patients’ experience obtained from on-line survey.

Background: We have reported a lack of specific training in dystonia by general neurologist (GN), family doctors (GP) and health professionals in a study performed by the European Network for the Study of Dystonia Syndromes (Valades et al. Eur J Neurol 2016.). But there no data of care from patients’ experience.

Method: The validated on-line questionnaire (available in 24 languages) was distributed to dystonia patients in Europe through dystonia website. Questionnaire was divided into 3 parts (1. General questions: gender, age, etc., 2. Specific questions: type of dystonia, time to correct diagnosis, etc., 3. Therapy, side effects, quality of life, etc.). Data were collected from 2017-2019.

Results: A total of 3000 questionnaires were received from 30 European countries. Women outnumbered men by about 3 to 1, while cervical dystonia was the most common type (48%). Only 29% of patients obtained a correct diagnosis within one year after first symptoms, while 14% waited longer than 10 years. Consequently,
only 25% of patients received treatment within one year, while 16% waited 5-10 years. In only 16% of patients GP recognized the symptoms during first visit and referred patients to appropriate specialist. Botulinum toxin was the most common type of treatment (45% of patients), followed by drugs (25%) and deep brain stimulation (19%). But only 30% of patients are satisfied with treatment. Dystonia affects working status in 59% of patients, social life 55% and every aspects of their life in 34% of patients.

Conclusion: Data obtained from first European on-line survey in dystonia patients showed a long interval to diagnosis and treatment and consequently pure quality of life (QoL). This is compatible with the limited knowledge of dystonia and lack of training of GN and GP retrieved from a previous study among neurologist. Recognizing dystonia is important for patients’ treatment and QoL.
(Management and quality of life of dystonia patients in Europe: a survey towards care from a patients’ experience.  Relja et al. EAN Oslo June 29th-July 2nd 2019.)

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