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PURPOSE: Telemedicine gained popularity in the setting of the COVID-19 pandemic. We aimed to study the satisfaction levels of persons with epilepsy (PWE) with online video consultation (OVC) and physical consultation (PC). METHODS: This was a cross-sectional questionnaire-based study conducted in a tertiary referral care center for epilepsy in India. All PWE who had availed of both OVC and PC were included. Those who did not give consent to a questionnaire were excluded. A questionnaire was given to assess patients' satisfaction regarding OVC and PC. Scores for each question for both OVC and PC were compared. RESULTS: One hundred and forty-one patients who had PC earlier and later availed of OVC from December 2020 to July 2021 formed the cohort. Seventy one patients who responded to the questionnaire were included. 49% and 51% of the patients belonged to urban and rural regions respectively. 8.5% of the patients were off anti-seizure medications (ASM), while 5.6% and 85.9% were on single and multiple ASMs respectively. There were no differences between PC and OVC regarding ease of getting the appointment, privacy during a consultation, patients' perceived chances of missing consultations, and overall comfort and experience on either type of consultation. Physical consultation scored more than OVC in patients' satisfaction with the time doctor spent with them, an opportunity to communicate their queries well, clarifications received from the doctor, and the likelihood of patients recommending the particular type of consultation to others(p < 0.05). CONCLUSIONS: Online video consultation can be a satisfactory alternative to PC and can improve patient satisfaction if some of the issues in OVC are addressed properly.
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COVID-19 , Epilepsy , Telemedicine , Humans , Pandemics , Cross-Sectional Studies , Follow-Up Studies , Referral and Consultation , Epilepsy/drug therapy , Patient Satisfaction , Personal SatisfactionABSTRACT
Posterior reversible encephalopathy syndrome (PRES) is an acute neurological disorder characterized by variable symptoms and radiological images characteristic of vasogenic parietal-occipital edema. It is associated with clinical conditions such as high blood pressure, infection / sepsis, or cytotoxic / immunosuppressive drugs, among others. It is characterized pathophysiologically by endothelial damage with breakdown of blood-brain barrier (BBB), cerebral hypoperfusion, and vasogenic edema.The cases are presented on two critical COVID-19 patients who were admitted to pneumonia requiring mechanical ventilation and who, after removing sedation, developed acute and reversible neurological symptoms consisting of epilepsy and encephalopathy, associated with hyperintense subcortical lesions on brain magnetic resonance imaging (MRI) compatible with PRES.SARS-CoV-2 coronavirus would activate an inflammatory response that would damage brain endothelium. It could be triggered by cytokine release, as well as by direct viral injury, given that endothelium expresses ACE2 receptors. It could explain the possible association between PRES and COVID-19.
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OBJECTIVE: This study assesses the hesitancy and safety of vaccination administration for the novel 2019 Coronavirus Disease (COVID-19) among adult people with epilepsy (PWE). METHODS: We recruited adult PWE who visited the outpatient epilepsy clinic from August 2021 to February 2022. We administered a structured questionnaire and a face-to-face interview regarding demographic factors, epilepsy characteristics, and relevant vaccine issues to all patients. Factors related to receiving a vaccine and epilepsy-related events after vaccination were then analyzed. RESULTS: A total of 501 PWE were surveyed; 288 were unvaccinated and 213 were vaccinated. Patients without jobs (OR: 0.59; 95% CI: 0.37-0.95, p = 0.03) were less likely to receive the vaccine compared to students or those with jobs. Other factors associated with vaccination were a higher number of anti-seizure medications (OR: 0.72; 95% CI: 0.55-0.95, p = 0.02) and a lower pre-vaccine seizure frequency (OR: 2.21; 95% CI: 1.06-4.59, p = 0.03). Of the 213 vaccinated patients, 10 (4.70%) reported at least one local and/or systemic side effect. Most patients (92.50%) did not report worse seizures within one month of vaccination. Poor ASM adherence (OR: 15.06; 95% CI: 1.75-129.87, p = 0.01) and fatigue/stimulant drinks such as caffeine (OR: 50.59; 95% CI: 7.57-337.94, p < 0.01) were significantly associated with seizure worsening within one month of receiving the COVID-19 vaccination. CONCLUSION: Almost two-fifths of patients with adult PWE have received a COVID-19 vaccine. Attention should be paid to educating epilepsy patients without jobs on the significance and safety of the vaccine. There was a low risk of seizure worsening in the short term after vaccination in PWE.
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BACKGROUND: The impact of pandemic has had worse effects in countries with already stretched healthcare resources. study's The study aimed to explore changes in epilepsy care delivery in resource-limited countries during and since the acute phase of the COVID-19 pandemic. METHOD: A cross-sectional survey was conducted in 22 countries among healthcare providers (HCPs) caring for persons with epilepsy (PWE), in collaboration with newly formed global collaborators, the International Epilepsy Equity Group. Findings were compared based on the World Bank Ranking (WBR) and HCPs' practice type. Data were analyzed using Chi-square tests (α = 0.05) and pairwise multiple comparisons with α = 0.017 (Bonferroni adjustment). Open-ended responses were analyzed using thematic analysis. FINDINGS: A total of 241 HCPs participated in the study. Of these, 8.30%, 65.98%, and 21.99% were from high-income (HIC), upper-middle-income (UMIC), and lower-middle-income countries (LMICs), respectively. Among HCPs, 31.12% were adult specialists, and 43.98% were pediatric specialists. During the acute phase of the pandemic, HCPs reported that the major barrier for PWE was difficulty reaching physicians/healthcare providers. Except for difficulty reaching physicians/healthcare providers (WBR P = 0.01 HIC < LMIC), no other significant differences in barriers during the acute phase were observed. Since the acute phase of the pandemic, the major concern for PWE was fear of getting infected with the SARS-CoV-2 virus. Significant differences in concerns since the acute phase included lockdowns (WBR: P = 0.03 UMIC < LMIC), fiscal difficulties (WBR: P < 0.001 UMICs < LMICs, UMICs < HIC; practice type: P = 0.006 adult < others, pediatrics < others), clinic closure (WBR: P = 0.003 UMIC < HIC; practice type: P =< 0.001 adult < others, pediatric < others), and long waiting times (WBR: P = 0.005, LMIC < UMIC, LMIC < HIC; practice type: P = 0.006 pediatric < adults). Diagnostic services, including EEG, MRI, CT (practice type: P < 0.001, adult < others; pediatric < others), and lab work (WBR: P = 0.01 UMIC < HIC), were restricted. The telephone was the most reported teleconsultation method used. Except for SMS/texting (WBR P = 0.02 UMIC < LMIC), there were no significant differences in teleconsultation methods used. DISCUSSION: There is a high probability that the initial wave and consequent reduction of in-person care, restriction of health services, and fiscal difficulties affecting all involved in care delivery, led to the disruption of epilepsy care. Additional support are needed in resource-limited countries to cope with future pandemics.
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PURPOSE: Children with epilepsy are at high risk for impairing symptoms of attention deficit hyperactivity disorder (ADHD), especially difficulties with attention. There is limited evidence regarding the use of psychological interventions for children with epilepsy and attention difficulties. We developed and piloted a novel psychoeducational intervention -Supporting Attention in Children with Epilepsy (SPACE). METHODS: Eligible children with epilepsy (8-13 years) and difficulties with attention underwent a comprehensive psychological assessment and took part in a single-arm trial of the SPACE intervention. The first three sessions of SPACE took place in groups of 3-5 children and two psychologists. The final three sessions involved one psychologist meeting the child and parent(s). The child's teacher joined for one of the final three sessions. The first group of participants participated in the intervention in person. Subsequent groups took part online due to COVID-19-related restrictions. Measures of ADHD -inattention symptoms (parent and teacher), executive functioning (child, parent, and teacher), and epilepsy-specific and general Health-Related Quality of Life (HRQOL) (child and parent) were administered before and three months after completing the intervention. RESULTS: Twenty-seven children with epilepsy expressed an interest in participating. Sixteen children met eligibility criteria and participated in a single-arm pilot of the intervention. All 16 participants completed the intervention. Pre- and post-intervention data were available for 15 of the 16 children. Improvement in function was noted on all measures and reached statistical significance for child ratings of executive functioning (p = 0.030) and HRQOL (p = 0.043), and parent-rated child HRQOL (p < 0.001). Qualitative feedback regarding content and acceptability was positive. CONCLUSION: A psychoeducational intervention for children with epilepsy and difficulties with attention can lead to improved executive functioning and HRQOL. Such an intervention may be a useful first-line intervention for children with epilepsy at risk for or diagnosed with ADHD and/or be used in combination with pharmacological treatment with children with epilepsy and ADHD. However, more robustly designed studies are needed.
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OBJECTIVE: To investigate the impact of the COVID-19 pandemic and related restrictions on the access and use of health services by children with epilepsy including nodding syndrome in Uganda. METHODS: Four focus group discussions (FGD) with parents/caregivers of children with epilepsy and five in-depth interviews with key informants were conducted between April and May 2021 at Butabika National Mental Referral Hospital and Kitgum General Hospital. RESULTS: COVID-19-related restrictions, including the halting of non-essential services and activities, and suspension of public transport, created several challenges not only for children with epilepsy and their parents/caregivers but also for their healthcare providers. Study participants described extreme transport restrictions that reduced their access to healthcare care services, increased food insecurity and shortage or inability to afford essential medicines as consequences of COVID-19-related restrictions. However, parents/caregivers and healthcare workers adopted several coping strategies for these challenges. Parents/caregivers mentioned taking on casual work to earn an income to buy food, medicines, and other necessities. Healthcare workers intensified outreach services to affected communities. A positive impact of lockdown measures described by some FGD participants was that most family members stayed at home and were able to care for children with epilepsy in turn. CONCLUSIONS: Our study highlights the significant negative impact of the COVID-19 pandemic and related restrictions on access to health services and the general well-being of children with epilepsy. Decentralized epilepsy treatment services and nutritional support could reduce the suffering of children with epilepsy and their families during the ongoing COVID-19 pandemic and similar future emergencies.
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Objective: As part of Epilepsy Connections' role in providing support to people affected by epilepsy, we aim to raise awareness of epilepsy at a community/grassroots level, with particular focus on: (1) school communities through our Schools Project/Seizure-Smart Schools;and (2) providing fun activities for families affected by childhood epilepsies (FACE). We recognise that for young people with epilepsy (YPE) to live their lives to the full, their needs go much further than the clinical involvement of their healthcare teams. Our objectives were (1) To promote knowledge of epilepsy, seizures and how to help when a seizure happens'so that YPE can go about their lives, confident that the people around them are informed and respectful;and (2) to provide fun activities for YPE and their families. Method(s): (1) Age-appropriate playground-based activities (message games, story time/roleplay/drama, arts and crafts, using hands-on brain/neuron models) for nursery/primary classes, and workshops for secondary/college students/school staff;(2) large-scale public events (virtual festivals and face-to-face) in collaboration with the Glasgow Science Centre, and EPNA Congress in Glasgow;(3) bespoke, supported days out for individual families;(4) Three residential trips to Ardentinny Outdoor Education Centre since September 2021, for families new to us and those already accessing our services. Result(s): (1) Engagement with thousands of participants;(2) YPE and families took part in fun, adventurous outdoors activities (canoeing, gorge walking, climbing, abseiling, forest and beach walks), got together for meals, informal peer support and family disco! Conclusion(s): Families value having breaks and activities in a supportive, inclusive and bespoke way. We re-modelled how we provide our activities within school communities and with FACE, to reflect COVID-19 protective measures. Nonetheless, the ongoing impact of COVID-19 restricts opportunities to engage.
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Objective: To describe a case of SARS-CoV-19-associated encephalitis in a neonate. Method(s): Case report. Report: A 9-day-old term neonate presented with two focal motor seizures (right upper limb jerking and facial twitching). He had a 1-day history of coryzal illness with reduced feeding, but was afebrile. Antenatal course was uneventful. He was born at term via vaginal delivery. He did not require resuscitation or admission to SCBU. Maternal history was notable for symptomatic SARS-CoV-19 infection at time of delivery. Two siblings subsequently tested positive for SARS-CoV-19. He had further seizures in the emergency department and was loaded with phenobarbitone. The infant was stabilised locally and transferred to a tertiary paediatric hospital for the management of neonatal sepsis. He never required respiratory support. However, he was diffusely hypotonic with poor suck, necessitating nasogastric feeding. Nasopharyngeal PCR was positive for SARS-CoV-19. Lumbar puncture microscopy was negative (WCC 6). All CSF bacterial and viral investigations were negative. CSF testing of SARS-CoV-19 was not available. Brain MRI revealed bilateral asymmetric areas of reduced diffusivity involving the subcortical white matter, medulla and the corpus callosum with frontal lobe predominance. He made a full neurologic recovery with supportive therapies and was discharged following a 9-day admission. He had no further clinical seizures and phenobarbitone was successfully weaned pre-discharge. Conclusion(s): In the absence of another aetiology or antenatal risk factor, SARS-CoV-19 infection was presumed causative in this case of focal seizures and white matter changes in this term neonate. White matter abnormalities on MRI imaging are reported in neonates with seizures in the context of other viral infections. Single case reports have been published of SARS-CoV-19 infection with associated abnormal MRI brain findings, particularly diffusion abnormalities of the corpus callosum, as seen in our case.
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Objective: To discuss the challenges in establishing the paediatric neurology service locally in a resource-limited setting and how we overcame these limitations. Methods/Challenges: (1) Discussion of the service prior to 2020;(2) Training of paediatricians and the local medical board drafted pathway for subspecialty registration;(3) The difficulties in securing posts within the health system (as well as the discrepancies amongst different regions within Trinidad and Tobago);(4) Discussion of a tiered referral system;(5) Limitations in services (including investigations and treatment options);(6) The effects of COVID-19 on a new sub-specialty service. Results/Discussion Points: Prior to 2020, there was no established paediatric neurology service. Changes in local medical board paediatric training from 2020 and the impacts on sub-specialty pathway registration. Discussion on the need for a national service provision due to the discrepancies amongst RHA trained consultants. The development of paediatric epilepsy surgery service within the Caribbean. This would influence the tiered referral system both locally and regionally. The routes for accessing investigations that are not available within the public healthcare setting, including genetic testing. Pathways for accessing treatment on a case-by-case basis. The impact of COVID-19 on service provision'negative and positive aspects. Conclusion(s): With the established local training pathway for paediatrics, as well as opportunities to extend our subspecialty knowledge base in developed countries e.g. UK, Canada, we can improve the services provided. Despite being an independent nation, we are grateful to our Commonwealth leaders for continuing to guide our professional tutelage.
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Objectives: It was recognised that a later phase extension study was less intense and a potential to transition to the clinical service with support from a coordinator, Epilepsy CNS (Clinical Nurse Specialist) and Neurology fellow. This case study will explore the planning, implementation methods, challenges and successes from the medical, nursing and family perspectives. Method(s): Initial strategic planning will be demonstrated and include a pathway taken to implement the transition. The requirements of the study were assessed, and a model was established of how the study will run in the clinical service. The CNS role was expanded to include research. Teaching and support were provided by the CRF team outlining individual roles and responsibilities. In order to understand the family, medical and nursing experience of research transition, a questionnaire has been completed at the end of study. Result(s): Challenges included new team to research, CNS time, medication accountability management, visit coordination, Covid-19 pandemic impacts on patient visits, and medical responsibilities combining clinical and research care. Collaborative solutions were found overcome these challenges. Positive outcomes: Epilepsy CNS available to families, new CNS skills, and stronger links established between research and clinical. Questionnaires have been analysed to gather data on patient experience, and common themes have been highlighted for considerations to take forward to future trial transitions. Conclusion(s): Overall, it has been a smooth successful transition. This has shifted the culture mindset that research and clinical care running separately. The drug is now approved for use as recommendation on NICE guidelines. The case study is a prime example of research and the clinical service working in unison. Portraying the research journey from early phase to NHS usage.
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Objective: This study aims to evaluate data from coronavirus disease-2019 (COVID-19) patients with neurological manifestations hospitalized in the intensive care unit (ICU). Materials and Methods: The study included data from COVID-19 patients with neurological manifestations hospitalized in ICU. Patients' demographic characteristics, risk factors, laboratory results, treatment methods, mechanical ventilation methods, use of non-invasive techniques to meet O-2 requirements, clinical outcome at discharge and after three months, and mortality rates were evaluated. Results: The study included 25 patients. Mean age of the patients was 66.76 +/- 12.93. Fifty two percent of the patients were male. Of the patients 96% had a positive polymerase chain reaction test, and 92% had lung involvement. The comorbidities of the patients were hypertension (48%), diabetes mellitus (28%), coronary artery disease (28%), cerebrovascular disease (20%), cancer (20%), and chronic obstructive pulmonary disease (12%). Seventy two percent of the patients presented with stroke. Of the patients %12 presented with encephalopathy, whereas patients with epilepsy and myasthenia gravis accounted for 8%. Patients' average length of stay in ICU was 13.16 +/- 12.44 days. Pressure-synchronized intermittent mandatory ventilation mode was used in 56% of patients. Number of intubation days was 9.5 +/- 12.26. All patients were treated with favipiravir and antiaggregant, 92% with steroids and antibacterial therapy, 52% with antiaggregant, 20% with plasma therapy, 8% with cytokine filter and immunoglobulin therapy, and 4% with monoclonal antibody therapy. During hospitalization, mortality rate was 48%, good clinical outcome rate was 36%. Conclusion: The rates of poor clinical outcomes are seen to be high during in-hospital treatment and follow-up of COVID-19 patients presenting with neurological symptoms, as well as at discharge.
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Objectives: The British Paediatric Neurology Association delivers three Paediatric Epilepsy Training courses (PET) to improve epilepsy care. It uses a global volunteer trained faculty of 400 trainers across 15 countries. The move to online courses, partially driven by COVID-19, has further focussed attention on faculty retention. This study used the Systems Engineering Initiative for Patient Safety (SEIPS) model to identify barriers and facilitators for faculty trainers, comparing face-to-face and online course delivery. Method(s): A questionnaire was distributed to 375 UK and international faculty members (n = 55) and participants were invited to follow-up semi-structured interviews (SSI) (n = 5). Questionnaire responses allowed quantitative analysis and comparison with a 2016 BPNA internal Faculty Motivation Report. Thematic analysis using the six elements of the SEIPS model was utilised for SSIs and questionnaire free text. Result(s): Faculty across countries stated their primary motivation to improve care of children with epilepsy, as in 2016. Most faculty trainers preferred face-to-face courses, with one country faculty the exception. Facilitators to retention at face-to-face courses were 'internal environment', 'tasks', and 'persons'. Faculty appreciated the environment, which facilitated networking and questions, additionally enhancing their own practice. Barriers were 'organisation', and 'tasks', primarily time demands, and the burden of travel. At online courses, barriers of time and travel were lessened, facilitating teaching. However, some found technology challenging, particularly those with less online experience. 'Internal environment' online was a barrier, with less connection to colleagues and learners. Some found that while courses remained valuable, they were less enjoyable. Conclusion(s): While PET courses run online appear to be popular with participants, the same may not be as true for faculty trainers. This may have implication for future faculty retention upon which the BPNA short courses are reliant.
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My Neuro Survey represents the fourth iteration of our biennial national neurological patient experience survey. For the first time, the 2021/22 survey included a version specifically for children and young people affected by neurological conditions and those who support them. The survey ran online and in select clinics between October 2021 and February 2022. Questions covered key topics including the impact of Covid-19, diagnosis, access to treatment and care, mental health and wellbeing, transition and education. Six hundred and twenty-nine people shared their experiences through the children and young people's survey. Eighty-seven percent of respondents were parents, 11% were children and young people themselves while 2% reported as other. The most reported neurological conditions were epilepsy, Tourette Syndrome, hydrocephalus and autism. Key topics and findings from the experiences of children and young people and those who support them are touched on below. 56% (n = 317) of respondents said their condition made their mental wellbeing much worse. 63% (n = 349) of respondents reported that their mental health has worsened during the pandemic. Sixty-six percent of respondents reported their mental wellbeing needs were being met to a small extent (31%, n = 159) or most often, not at all (35%, n = 179). 85% (n = 250) applicable respondents reported that they had not been offered a named worker to support the transition process between pediatric and adult services but would find this helpful. Twenty-percent (n = 89) of applicable respondents reported not being given an explanation at diagnosis or when they were first told about their condition. The experiences of children and young peoples survey respondents helped to inform a series of national policy reports with targeted recommendations, 'Together for the 1 in 6', and a campaign calling on Governments across the UK to '#BackThe1in6' and set up a Neuro Taskforce. Our presentation would explore key findings in detail and highlight opportunities to improve patient experience.
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BACKGROUND: We designed this study to investigate the effects of the coronavirus disease 2019 (COVID-19) vaccine on epileptic seizures, as well as its adverse effects, in children with epilepsy (<18 years). METHODS: This anonymous questionnaire study involved a multicenter prospective survey of outpatients and inpatients with epilepsy (ï¼18 years) registered in epilepsy clinics in eight hospitals in six cities of Shandong Province. RESULTS: A total of 224 children with epilepsy were included in the study. Fifty of them experienced general adverse events after vaccination. The most common local adverse events were pain or tenderness at the injection site. The most common systemic adverse effects were muscle soreness and headache. No severe adverse events were reported. There were no significant differences in the number of antiseizure medications (P = 0.459), gender (P = 0.336), etiology (P = 0.449), age (P = 0.499), duration of disease (P = 0.546), or seizure type (P = 0.475) between the patients with and without general adverse events. We found that the risk of seizure after vaccination was decreased in children who were seizure free for more than six months before vaccination. There was no significant difference in the number of seizures during the first month before vaccination, the first month after the first dose, and the first month after the second dose (P = 0.091). CONCLUSION: The benefits of vaccination against COVID-19 outweighed the risks of seizures/relapses and severe adverse events after vaccination for children with epilepsy.
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COVID-19 , Epilepsy , Humans , Child , Anticonvulsants/therapeutic use , COVID-19 Vaccines , Prospective Studies , Epilepsy/drug therapy , Seizures/drug therapyABSTRACT
Objectives: To assess the impact of COVID-19 illness and pandemic era on sleep, general health, health care, and social status in patients with epilepsy in the Czech Republic. Methods: Our designed and approved questionnaire consisted of 23 questions. We focused on (1) patients' demographic and epidemiological data regarding COVID-19, (2) subjective assessment of sleep; (3) epilepsy, and (4) perception of general health during the first year of the COVID-19 pandemic in the Czech Republic from March 2020 to May 2021. We administered the questionnaires during outpatient visits or by phone calls in three major university Czech epilepsy centers (Ostrava, Brno, Pilsen). Results: We enrolled 227 (100%) patients. The mean age (±SD) was 41.2 ± 14.82 years (min 18, max 86 years), and 138 (61%) were women. COVID-19 was confirmed using the PCR test method in 57 (25.1%) patients. In the pre-pandemic era, 62 (27.3%) patients reported sleep disturbances. Insomnia in 46 (74.2%) and excessive daytime sleepiness in 6 (9.7%) were the most mentioned sleep abnormalities. Nocturnal seizures predispose to sleep impairment (p = 0.014) and vivid dreams and nightmares (p = 0.033). COVID-19 infection significantly increased the risk of vivid dreams and nightmares in patients with diurnal seizures (p = 0.006). Sleep quality impairment and seizure frequency worsening [(p < 0.001) and (p = 0.001), respectively] were the most significant risk factors to perform general health deterioration regardless of having COVID-19 (p = 0.559). The most affected age group was 51+ years (p = 0.033). The three centers provided adequate outpatient care during the first year of the pandemic. The employment and social status of the patients remained unchanged (p = 0.074). Conclusions: COVID- 19 infection significantly increased the occurrence of vivid dreams and nightmares in patients with diurnal seizures. Sleep quality deterioration and seizure frequency worsening significantly negatively impacted general health performance.
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There is a paucity of literature regarding the optimal selection of combination antiseizure medications (ASMs) for drug-resistant epilepsy (DRE). The aim of this scoping review is to evaluate current evidence related to "rational polytherapy" among adults with DRE. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-SCr) guidelines, PubMed, ProQuest, CINAHL, and Cochrane databases were searched using DRE- and polytherapy-related keywords. The exclusion criteria applied included: non-English; non-human studies; non-research studies; participants less than 18 years; status epilepticus; ASM monotherapy; and certain ASMs. In Covidence, two researchers independently reviewed articles for inclusion at each phase, with a third resolving conflicts. Data were extracted, with quality appraisal using the Mixed Methods Appraisal Tool (MMAT). Of the 6477 studies imported for screening, 33 studies were included. Clinical, humanistic, and economic outcomes were reported by 26, 12, and one study, respectively. Common efficacy-related clinical outcomes included ≥50% reduction in seizure frequency (n = 14), seizure freedom (n = 14), and percent reduction in seizure frequency (n = 8). Common humanistic outcomes included quality of life (n = 4), medication adherence (n = 2), sleep-related outcomes (n = 2), and physician and patient global assessments (n = 2). The economic study reported quality-adjusted life years. The median MMAT score was 80 (range: 60-100). Two studies referenced the standard definition of DRE, whereas five studies did not specifically define DRE. Gaps in the literature include limited generalizability, minimal reports in pregnancy, and lack of optimal ASM combinations, among others. Strengths of the evidence include addressing a variety of outcomes. Inconsistent definitions of DRE, small sample sizes, and heterogeneity among studies limit the ability to draw meaningful conclusions. Optimal combinations of ASMs for rational polytherapy for DRE is unclear.
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Drug Resistant Epilepsy , Status Epilepticus , Adult , Humans , Quality of Life , Drug Resistant Epilepsy/drug therapyABSTRACT
Objective During the coronavirus disease 2019 (COVID-19) pandemic, many social activities have moved online using applications for digital devices (e.g. computers, smartphones). We investigated the needs of telemedicine and trends in medical status and social care situations of Japanese patients with neurological disorders in order to estimate their affinity for an online telemedicine application. Methods We designed an original questionnaire for the present study that asked participants what problems they had with hospital visits, how the COVID-19 pandemic had affected their lives, and whether or not they would like to receive telemedicine. Patients The present study included volunteer caregivers, participants with Parkinson's disease (PD), epilepsy, stroke, dementia, immune-mediated neurological disease (IMMD), spinocerebellar degeneration (SCD), amyotrophic lateral sclerosis (ALS), headache, myopathy, and other neurological diseases from Okayama University Hospital. Results A total of 29.6% of patients wanted to use telemedicine. Patients with headaches (60.0%) and epilepsy (38.1%) were more likely to want to use telemedicine than patients with PD (17.8%) or stroke (19.0%). Almost 90% of patients had access to a digital device, and there was no association between favoring telemedicine, ownership of a digital device, hospital visiting time, or waiting time at the hospital, although age was associated with motivation to telemedicine use (52.6 vs. 62.2 years old, p <0.001*). Conclusion We can contribute to the management of the COVID-19 pandemic and the medical economy by promoting telemedicine, especially for young patients with headaches or epilepsy.