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

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<0.001). The neurology admissions (with numbness-weakness in extremities) were associated with more prompt (median 0.3 vs. 0.5 months, p=0.032) and more frequent onset of treatment after diagnosis (64.5% vs. 2.2% to 15.2%, p<0.001). Time from presentation to diagnosis was longer in patients aged >50 years (median 6.0 months vs. 2.0 months, p<0.001), in patients using alternative medicine (median 3.0 months vs. 1 month, p=0.001) and in patients admitted to a non-MS-center (median 3.0 months vs. 2.0 months, p=0.002). Median (min-max) age at diagnosis was significantly lower in patients with vs. without treatment discontinuation for any reason (26.0(10-56) vs. 29.0(3-60) years, p<0.001) and treatment switching (27.0(5-93) vs. 30.0(3-60) years, p<0.001). CONCLUSIONS: In conclusion, our findings revealed higher likelihood of earlier diagnosis and earlier treatment in patients admitted to an MS-center and in those presenting with ocular problems and sensory-motor deficits, respectively. Our findings also emphasize the association of older patient age with higher likelihood of diagnostic delay, and increased likelihood of treatment discontinuation for any reason and/or treatment switching in case of older patient age, younger age at diagnosis and diagnostic delay. In this regard, our findings highlight the need for improved awareness among patients as well as clinicians on initial manifestations of MS to enable admission or referral to an MS-center and to prevent delay in diagnosis, particularly for onset symptoms other than ocular or sensory-motor characteristics.

Hemifacial spasm in sleep - A polysomnographic study.

BACKGROUND: Polysomnography (PSG) studies in patients with facial dyskinesias are few. With regard to hemifacial spasm (HFS), one study reported the continuity of spasms during sleep which was not confirmed elsewhere using a PSG. Therefore, we sought to investigate abnormal facial movements during sleep in patients with HFS. METHODS: All patients have undergone PSG assessments. Facial spasms were recorded using an electromyography (EMG) and quantified according to the duration of the hyperkinetic episodes in each epoch of 60 s. Scores were compared between wakefulness and sleep as well as within the sleep stages. Number of arousals and their association with the EMG activity is also evaluated. RESULTS: Twelve patients with a mean age of 58 (35-76) years and disease duration of 7.8 (2-20) years were included in the study. In seven of them all sleep stages were detected. Facial spasms continued in sleep in all patients with a significant decrease compared to wakefulness (p < 0.001). No significant difference between non-REM and REM stages are found with regard to EMG activity (p = 0.35). On average, sleep was interrupted 5.9 (±2.8) times mostly in non-REM-II and least in REM sleep. CONCLUSION: This study confirms the continuity of hyperkinetic movements of HFS during sleep despite a significant decrease compared to wakefulness causing increased arousals. These findings highlight the importance of assessing the sleep quality in patients with HFS.

Performance and Capacity Measurement of the Lower Extremities in Multiple Sclerosis -How to Approach?

Walking limitations play a key role in the development of disability in multiple sclerosis (MS) patients. Vast majority of patients, even in the very early stages of the disease, experience walking disturbances. Measuring capacity and performance in lower extremities enables us to 1) monitor disease pregression; 2) evaluate treatment responses; 3) determine the necessity of new treatment strategies on time. The purpose of this review is to highlight the importance of regular walking assessments in MS patients, give idea about which measurement tools to choose, and provide insight for future investigations in the light of new technological developments.