{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T08:05:36Z","timestamp":1753862736553,"version":"3.41.2"},"reference-count":29,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2025,2,28]],"date-time":"2025-02-28T00:00:00Z","timestamp":1740700800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Brain and Behavior"],"published-print":{"date-parts":[[2025,3]]},"abstract":"<jats:title>ABSTRACT<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Understanding real\u2010world experiences is crucial in determining the potential gaps in patient\u2010centered healthcare in dystonia. We explored the challenges of people with dystonia (PwD) at the stages of diagnosis and botulinum neurotoxin (BoNT) treatment.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A multicenter survey was conducted face\u2010to\u2010face across seven university hospitals in Turkey. PwD receiving BoNT treatment for at least 6 months were invited. Data on demographics, diagnostic journeys, and treatment experiences were collected and analyzed using descriptive statistics and regression models.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>A total of 789 PwD participated, reporting significant burdens during both diagnostic and treatment stages. Diagnosis was delayed by approximately 1 year, with 15% receiving incorrect initial diagnoses. Additionally, 30.7% of PwD traveled to another city, and 42.6% applied to private clinics for diagnosis, leading to a substantial logistic and financial burden. The treatment stage revealed that a quarter of PwD had to travel significant distances every 3 months, or applied to a private clinic to receive BoNT injections, creating considerable cost and effort. In addition, PwD with oromandibular dystonia were three times and task\u2010specific dystonia were around nine times less likely to be satisfied with BoNT treatment compared to facial dystonia. Alternative treatment was reported in 11%, with no substantial benefit.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The findings highlight critical unmet needs in the diagnostic and treatment processes for PwD. These include improvement in diagnostic accuracy, reduced travel and financial burdens, and enhanced treatment satisfaction. An action plan emphasizing resource utilization policies and educational activities for healthcare providers is essential to address these challenges.<\/jats:p><\/jats:sec>","DOI":"10.1002\/brb3.70325","type":"journal-article","created":{"date-parts":[[2025,3,11]],"date-time":"2025-03-11T13:55:07Z","timestamp":1741701307000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient Burden in Dystonia Diagnosis and Botulinum Toxin Treatment: A Nationwide Survey in Turkey"],"prefix":"10.1002","volume":"15","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0367-4102","authenticated-orcid":false,"given":"Rezzak","family":"Yilmaz","sequence":"first","affiliation":[{"name":"Department of Neurology Ankara University School of Medicine  Ankara Turkey"},{"name":"Brain Research Center Ankara University  Ankara Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nevra","family":"\u00d6ks\u00fcz","sequence":"additional","affiliation":[{"name":"Department of Neurology Mersin University School of Medicine Mersin Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mustafa","family":"Ceylan","sequence":"additional","affiliation":[{"name":"Department of Neurology Atat\u00fcrk University School of Medicine Erzurum Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0667-2329","authenticated-orcid":false,"given":"Bedia","family":"Samanci","sequence":"additional","affiliation":[{"name":"Behavioral Neurology and Movement Disorders Unit, Department of Neurology Istanbul Faculty of Medicine, Istanbul University Istanbul Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ahmet","family":"Acarer","sequence":"additional","affiliation":[{"name":"Department of Neurology Ege University School of Medicine Izmir Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2943-2240","authenticated-orcid":false,"given":"Nazl\u0131","family":"Durmaz \u00c7elik","sequence":"additional","affiliation":[{"name":"Department of Neurology Osmangazi University School of Medicine Eskisehir Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hacer","family":"Erdem Tilki","sequence":"additional","affiliation":[{"name":"Departments of Neurology and Clinical Neurophysiology Ondokuz May\u0131s University School of Medicine Samsun Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Serhat","family":"\u00d6zkan","sequence":"additional","affiliation":[{"name":"Department of Neurology Osmangazi University School of Medicine Eskisehir Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ha\u015fmet","family":"Hana\u011fas\u0131","sequence":"additional","affiliation":[{"name":"Behavioral Neurology and Movement Disorders Unit, Department of Neurology Istanbul Faculty of Medicine, Istanbul University Istanbul Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Okan","family":"Dogu","sequence":"additional","affiliation":[{"name":"Department of Neurology Mersin University School of Medicine Mersin Turkey"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"M. 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