Tuesday, April 28April 14, 2020Free AccessBright White Light Therapy for the Treatment of Multiple Sclerosis (MS) Associated Fatigue: A Randomized, Controlled Trial (1813)Farrah Mateen, Andre Vogel, Tamara Kaplan, Gladia Hotan, Natalie Manalo, Sara Grundy, Kathryn Holroyd, Matthew Stauder, and Aleksandar VidenovicAuthors Info & AffiliationsApril 14, 2020 issue94 (15_supplement)https://doi.org/10.1212/WNL.94.15_supplement.1813 Letters to the Editor
Objective: To assess the applicability of a smartphone-based electroencephalography (EEG), the Smartphone Brain Scanner-2 in a low-income country, including quality of results and usefulness of repeat testing. Background: People with epilepsy in Sub-Saharan Africa are often undiagnosed. We examine a low-cost, portable smartphone-based EEG technology in a heterogeneous epilepsy cohort in the West African Republic of Guinea. Design/Methods: The SBS2 system consists of an Android tablet wirelessly connected to a 14-electrode EasyCap headset. SBS2 was performed in people with suspected epilepsy in Guinea (2018–19), with a repeat EEG carried out at a variable time interval. Recordings were interpreted by U.S., Canadian, and U.K. experts in Clinical Neurophysiology. Results: We included 149 participants (41% female, median age 17.9 years). 66.6% ≤ 21 years; mean number of seizures per month 5.7 +/−15.5. The mean duration of EEG1 was 53 minutes +/−12.3 and EEG2 was 29.6 minutes +/−12.8. The mean quality score of EEG1 and EEG2 independently was 6.4 (range 1(low)-10(high), median 7.0). 29.5% of participants had epileptiform discharges (EDs) at EEG1 and 16.7% at EEG2. 41.6% had abnormal slowing and/or EDs at EEG1 and 28.8% at EEG2. 26.1% were recommended for neuro-imaging after EEG1 and 14.7% after EEG2. Of those without EDs at EEG1 (n=53, 55.8%), 7 (13.2%) had EDs at EEG2. Of those with detectable EDs on EEG1 (n = 23, 24.2%), 12 (52.1%) did not have EDs at EEG2. Patients for whom at least one EEG was not scored for EDs were excluded from the comparative ED analysis (n = 54, 36%). Conclusions: The SBS2 has a reproducible level of quality on repeat testing and is useful for the detection of EDs. One EEG of approximately 50 minutes was adequate to support diagnosis. The need for neuroimaging access in this patient population is evident. Disclosure: Dr. Ayub has nothing to disclose. Dr. Leung has nothing to disclose. Dr. Fantaneanu has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with UCB, Eisai, and Sunovion. Dr. Patel has nothing to disclose. Dr. Vyas has nothing to disclose. Dr. Milligan has nothing to disclose. Dr. Villamar has nothing to disclose. Dr. Hoch has nothing to disclose. Dr. Purves has nothing to disclose. Dr. Esmaeili has nothing to disclose. Dr. Tellez-Zenteno has nothing to disclose. Dr. Gonzalez-Giraldo has nothing to disclose. Dr. Tolokh has nothing to disclose. Dr. Heidarian has nothing to disclose. Dr. Worden has nothing to disclose. Dr. Jadeja has nothing to disclose. Dr. Fridinger has nothing to disclose. Dr. Lee has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Receive clinical trial funds from Novartis Canada, Roche Canada Serve on ad boards for Celgene, Novartis Canada, Roche Canada, Teva Neuroscience, Serono Canada, Genzyme Canada, Biogen Canada. Dr. Lee has received research support from Receive clinical trial funds from Novartis Canada, Roche Canada Serve on ad boards for Celgene, Novartis Canada, Roche Canada, Teva Neuroscience, Serono Canada, Genzyme Canada, Biogen Canada. Dr. Cisse has nothing to disclose. Dr. Mateen has received research support from IQVIA.
To report the understanding and decision-making of neuroimmunologists and their treatment of patients with multiple sclerosis (MS) during the early stages of the SARS-CoV-2 (COVID-19) outbreak. A survey instrument was designed and distributed online to neurologists in April 2020. There were 250 respondents (response rate 21.8%). 243 saw > = 10 MS patients in the prior 6 months (average 197 patients) and were analyzed further (92% USA, 8% Canada; average practice duration 16 years; 5% rural, 17% small city, 38% large city, 40% highly urbanized). Patient volume dropped an average of 79% (53–11 per month). 23% were aware of patients self-discontinuing a DMT due to fear of COVID-19 with 43% estimated to be doing so against medical advice. 65% of respondents reported deferring > = 1 doses of a DMT (49%), changing the dosing interval (34%), changing to home infusions (20%), switching a DMT (9%), and discontinuing DMTs altogether (8%) as a result of COVID-19. Changes in DMTs were most common with the high-efficacy therapies alemtuzumab, cladribine, ocrelizumab, rituximab, and natalizumab. 35% made no changes to DMT prescribing. 98% expressed worry about their patients contracting COVID-19 and 78% expressed the same degree of worry about themselves. > 50% believed high-efficacy DMTs prolong viral shedding of SARS-CoV-2 and that B-cell therapies might prevent protective vaccine effects. Accelerated pace of telemedicine and practice model changes were identified as major shifts in practice. Reported prescribing changes and practice disruptions due to COVID-19 may be temporary but could have a lasting influence on MS care.
Purpose: The purpose of this study was to characterize the reasons, extent, and impact of traditional medicine use among people with epilepsy (PWE) in the Republic of Guinea. Methods: Guinea is a low-income country in sub-Saharan Africa (SSA) with limited healthcare resources. People with epilepsy and their caregivers were seen at a public referral hospital in Conakry, the capital city, where they completed semi-structured interviews with physicians regarding their beliefs about epilepsy, medical care, and engagement with traditional healers. Results: Of 132 participants (49% children, 44% female, 55% with a university-educated head of household), 79% had seen a traditional healer, and 71% saw a traditional healer before seeing a medical provider for their epilepsy. Participants were treated by a traditional healer for a mean of 39 months before seeing a medical provider. By contrast, 58% of participants reported taking antiepileptic drugs (AEDs) regularly: 46% reported having under-gone a head computed tomography (CT) scan; 58% reported having had an electroencephalogram, and 4% reported having had a brain magnetic resonance imaging (MRI) scan. Conclusions: Traditional healers in Guinea provide frontline care for PWE in Guinea with considerable delays in AED initiation, even among a cohort of PWE actively seeking medical care. Engaging with these healers is critical for both influencing community perceptions and appropriately managing epilepsy throughout the country. (C) 2019 Elsevier Inc. All rights reserved.
BACKGROUND:We characterize the variations in availability and affordability of NMO diagnostic testing and treatment by geographic region and country-level income group.METHODS:A structured survey was distributed in English, French, and Spanish in late 2018 to neurologists and other physicians who encounter NMO patients.RESULTS:Respondents (response rate 45%, 64/143 countries contacted) came from all WHO world regions and World Bank country income levels (49% university-based; 13 low-, 16 lower middle-, 16 upper-middle-, and 15 high-income countries). The average cost of an aquaporin-4 antibody (AQP4-Ab) test to a patient globally was 209 USD, and the average cost of NMO treatment per year was 3,819 USD. AQP4-Ab and myelin oligodendrocyte glycoprotein-antibody (MOG-Ab) testing were available in 68% and 38% of all countries. Low-income countries had poor availability of both AQP4-Ab (2/13 countries) and MOG-Ab (1/13) compared to high-income countries (15/15 AQP4-Ab, 13/15 MOG-Ab). Nearly half (48%, 13/27) of African and Eastern Mediterranean countries had access to neither test.GLOBAL TREATMENT AVAILABILITY AND USAGE:Azathioprine (88%), rituximab (50%), mycophenolate mofetil (57%), intravenous methylprednisolone (98%), oral prednisone (68%), plasma exchange (78%), intravenous immunoglobulin (72%). Whereas 70-100% of high-income countries' patients could afford treatment without incurring a catastrophic health expenditure, <10% of low-income country patients could. Most low-income countries (12/13) reported the patient pays for NMO care entirely without public assistance CONCLUSIONS: There is a gap in access to diagnostic testing for NMO in non-high-income countries, even in countries where acute and immunosuppressive treatment for NMO are available.
ObjectiveTo characterize the risk factors, clinical course, and treatment of patients with progressive multifocal leukoencephalopathy (PML) diagnosed and followed over a 25-year epoch at 2 academic hospitals.MethodsPatients with a definite diagnosis of PML were identified by positive CSF PCR for JC virus or histopathology between January 1, 1994, and January 1, 2019. Demographic and PML-specific variables were recorded on symptomatic presentation and at follow-up, including risk factors, clinical outcome, neuroimaging findings, and modified Rankin Scale (mRS) score at last follow-up.ResultsThere were 91 patients with confirmed PML. HIV infection was the most common risk factor, identified in 49% (n = 45). Other frequent risk factors included lymphoma, leukemia, or myelodysplasia, identified in 31% of patients (n = 28); exposure to chemotherapeutic medications (30%, n = 27); and exposure to monoclonal antibody therapies (19%, n = 17). Thirty percent of the cohort was alive at the time of censoring, with a median mRS of 2 points, indicating slight disability at last follow-up. Median survival following PML diagnosis in HIV-infected patients was longer than in HIV-uninfected patients (1,992 vs 101 days, p = 0.024). Forty patients survived more than 1 year after PML symptom onset, of whom 24 were HIV infected (60%). Thirteen patients survived more than 10 years after PML symptom onset, all HIV infected, of the 59 patients diagnosed before June 1, 2009, and eligible for 10-year survivor status (22%).ConclusionsWe add to the limited literature on PML by reporting its epidemiology in a large observational cohort. These parameters may be useful for future clinical trials that measure survival and clinical outcomes.
Objective To characterize the risk factors, clinical course, and treatment of patients with progressive multifocal leukoencephalopathy (PML) diagnosed and followed over a 25-year epoch at 2 academic hospitals. Methods Patients with a definite diagnosis of PML were identified by positive CSF PCR for JC virus or histopathology between January 1, 1994, and January 1, 2019. Demographic and PML-specific variables were recorded on symptomatic presentation and at follow-up, including risk factors, clinical outcome, neuroimaging findings, and modified Rankin Scale (mRS) score at last follow-up. Results There were 91 patients with confirmed PML. HIV infection was the most common risk factor, identified in 49% (n = 45). Other frequent risk factors included lymphoma, leukemia, or myelodysplasia, identified in 31% of patients (n = 28); exposure to chemotherapeutic medications (30%, n = 27); and exposure to monoclonal antibody therapies (19%, n = 17). Thirty percent of the cohort was alive at the time of censoring, with a median mRS of 2 points, indicating slight disability at last follow-up. Median survival following PML diagnosis in HIV-infected patients was longer than in HIV-uninfected patients (1,992 vs 101 days, p = 0.024). Forty patients survived more than 1 year after PML symptom onset, of whom 24 were HIV infected (60%). Thirteen patients survived more than 10 years after PML symptom onset, all HIV infected, of the 59 patients diagnosed before June 1, 2009, and eligible for 10-year survivor status (22%). Conclusions We add to the limited literature on PML by reporting its epidemiology in a large observational cohort. These parameters may be useful for future clinical trials that measure survival and clinical outcomes.