Abstract Details

Title Management and Quality of Life of Dystonia Patients in Europe: A Survey Towards Care from a Patients’ Experience

Topic Movement Disorders

Presentation(s) P15 - Poster Session 15 (12:00 PM-1:00 PM)

Poster/Presentation
Number 3-015

Objective

To investigate managements and quality of life (QoL) of dystonia patients in Europe using patients’ on-line questionnaire

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 (Valadas et al. Eur J Neurol 2016). But there are no data of care from a patients’ perspective.

Design/Methods The validated on-line questionnaire (available in 24 languages on Dystonia Europe website ) was distributed to dystonia patients. Questionnaire was divided into three parts (I. General questions: name, age etc. II. Specific questions: type of dystonia, time to correct diagnosis etc. III. Therapy, quality of life, etc.). Data were collected from 2017- 2019.

Results A total 2858 questionnaires were received from 30 countries. Women outnumbered men by about 3 to 1, while cervical dystonia was the most common type (48%) followed by generalized dystonia (12%). Only 29% patients obtained a correct diagnosis within one year after first symptoms, while 14% waited longer than 10 years. Botulinum toxin was the most common type treatment (45% of patients) followed by DBS in 19%. But only 30% of patients are satisfied with treatment. Dystonia affects family life in 69% of patients, working status in 59%, social life in 55% and every aspects of their life in 34% of patients.

Conclusions First European online questionnaire in dystonia patients shows a long interval to diagnosis and treatment and consequently pure QoL. Data suggest that lack of training of health professionals lead to delayed diagnosis. This is compatible with the limited knowledge of dystonia and lack of training of GN and GP retrieved from a previous study among neurologists. Recognizing dystonia is important for patient treatment and quality of life.

Authors/Disclosures
Maja Relja, MD (Zagreb University, Medical School of Zagreb) PRESENTER	No disclosure on file
	No disclosure on file
Alberto Albanese, MD (Universita Cattolica Sacro Cuore)	Dr. Albanese has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Ipsen pharma. Dr. Albanese has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Merz pharms. Dr. Albanese has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Frontiers Publishing Group. Dr. Albanese has a non-compensated relationship as a President with International Association on Parkinsonism and Related Disorders that is relevant to �鶹��ýӳ�� interests or activities.
Kailash P. Bhatia, MD, F�鶹��ýӳ�� (UCL)	Dr. Bhatia has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Ipsen. Dr. Bhatia has received publishing royalties from a publication relating to health care.
Dirk W. Dressler, MD (Rostock University)	No disclosure on file
Joaquim Ferreira (Instituto De Medecina Molecular Lisboa)	No disclosure on file
Joachim Krauss	No disclosure on file
Elena Moro, MD, F�鶹��ýӳ�� (Grenoble Alpes University)	Dr. Moro has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Medtronic. Dr. Moro has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Springer. The institution of Dr. Moro has received research support from Abbott. The institution of Dr. Moro has received research support from Medtronic.
	No disclosure on file
Marie Vidailhet, MD, PhD (Salpetriere Hospital)	No disclosure on file

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