A comprehensive assessment of patient experience and disease-related awareness in multiple sclerosis: A questionnaire-based nation-wide survey in Turkey

•The average time was 1.2 years for diagnosis and 2.5 months for onset of treatment.•Faster diagnosis was more likely in ophthalmology admissions.•Onset of treatment after diagnosis was more likely in neurology admissions.•Awareness on manifestations of MS should be improved to prevent delay in diag...

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Veröffentlicht in:Multiple sclerosis and related disorders 2021-07, Vol.52, p.103005-103005, Article 103005
Hauptverfasser: Demir, Serkan, Tutuncu, Melih, Uzunkopru, Cihat, Gumus, Haluk, Sen, Sedat, Gunduz, Tuncay, Dogan, Ipek Gungor, Cinar, Bilge Piri, Incirli, Sila Usar, Tutuncu, Mesude, Mavi, Kamil, Yuksel, Suha, Togrol, Rifat Erdem, Kocaman, Ayse Sagduyu, Siva, Aksel
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Sprache:eng
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Zusammenfassung:•The average time was 1.2 years for diagnosis and 2.5 months for onset of treatment.•Faster diagnosis was more likely in ophthalmology admissions.•Onset of treatment after diagnosis was more likely in neurology admissions.•Awareness on manifestations of MS should be improved to prevent delay in diagnosis. Background: Comprehensive assessment of multiple sclerosis (MS) patients in terms of patient profile, clinical and disease-related factors has great epidemiological value. This study aimed to evaluate patient experience and disease-related awareness in MS patients through a nation-wide survey in Turkey Methods: A total of 1379 MS patients participated in this cross-sectional questionnaire survey conducted between November 2018 and December 2018. The online questionnaire form included items on sociodemographic, disease-related, first-admission, treatment and follow up characteristics as well as the disability status. Results: Patients were diagnosed at median 28.0 years of age, while the average time from admission to diagnosis and time from diagnosis to treatment were 1.2 years and 2.5 months, respectively. Neurology (45.4%) and ophthalmology (23.3%) were the most common clinics for the first admission, while numbness-weakness in lower and upper extremities (37.6%) and double vision-visual problems (30.6%) were the most common symptoms on initial admission. Treatment was initiated after the diagnosis in 1213(88.0%) patients, while 166 (12.0%) patients were treatment-naïve. Treatment discontinuation, treatment switch and use of alternative treatment methods were reported by 31.3%, 49.3% and 22.8% of patients, respectively. The ophthalmology admissions (with double vision or visual problems) were associated with the shortest time from presentation to diagnosis as compared with neurosurgery and internal medicine admissions (median 1.0 vs. 3.0 and 4.0 months, p
ISSN:2211-0348
2211-0356
DOI:10.1016/j.msard.2021.103005