The effects of coronavirus disease 2019 (COVID-19) pandemic on people with epilepsy (PwE): an online survey-based study.

During the unprecedented COVID-19 pandemic in 2020, the whole world faced an unusual health emergency. Medical care of chronic neurological diseases, such as Epilepsy, is being neglected. In this survey, we aimed to evaluate the impact of the COVID-19 pandemic on the care of people with Epilepsy (PwE) and to identify their risk factors for seizure worsening to direct better future medical care. We administered a web-based survey (submitted on August 5, 2020). It included socio-demographic, Epilepsy-related, and psychometric data (The Depression, Anxiety, and Stress Scale-21 Items(DASS21) and The Pittsburgh Sleep Quality Index (PSQI). Regression analysis identified predictors of seizure worsening. We collected responses from an online survey of PwE during the pandemic. Out of 151 responders, 71 patients complained of issues related to Epilepsy management and all of whom reached the treating physician and solved their problems. Sleep quality was compromised in 84 patients (55.6%). Two-thirds of the patients in our cohort (66.2%) reported depression, 72.2% reported anxiety, and 75.5% reported stress. Eight patients (5.3%) got COVID-19 infection, and only one patient suffered from mild worsening of the seizure. The main concerns were shortage of medications for 46 (30.5%) patients, getting Coronavirus infection for 67 (44.4%) patients, and seizure worsening for 32 (21.3%) patients. Thirty-five patients (23.2%) reported seizure worsening, which was best explained by retirement or jobless state, having moderate or severe stress, poor sleep quality, vagus nerve stimulation (VNS), fear of getting COVID-19 infection, fear of worsening of seizures, or shortage of medication. During the current COVID-19 pandemic, a significant percentage of PwE experienced worsening of their seizures. This unusual, challenging experience clarifies the urgent need to establish telemedicine services and home-based management of Epilepsy, including ambulatory EEG, home video, and medication delivery to patients' homes to provide continuous medical care.

Impact of COVID-19 pandemic on epilepsy practice in India: A tripartite survey.

OBJECTIVE: To assess the impact of ongoing COVID-19 pandemic on epilepsy care in India. METHODS: We conducted a three-part survey comprising neurologists, people with epilepsy (PWE), and 11 specialized epilepsy centers across India. We sent two separate online survey questionnaires to Indian neurologists and PWE to assess the epilepsy practice, seizures control, and access to care during the COVID-19 pandemic. We collected and compared the data concerning the number of PWE cared for and epilepsy procedures performed during the 6 months periods preceding and following COVID-19 lockdown from epilepsy centers. RESULTS: The survey was completed by 453 neurologists and 325 PWE. One third of the neurologist reported >50 % decline in outdoor visits by PWE and EEG recordings. The cumulative data from 11 centers showed 65-70 % decline in the number of outdoor patients, video-EEG monitoring, and epilepsy surgery. Working in a hospital admitting COVID-19 patients and use of teleconsultation correlated with this decline. Half of PWE had postponed their planned outpatient visits and EEG. Less than 10 % of PWE missed their antiseizure medicines (ASM) or had seizures due to the nonavailability of ASM. Seizure control remained unchanged or improved in 92 % PWE. Half of the neurologists started using teleconsultation during the pandemic. Only 4% of PWE were afflicted with COVID-19 infection. CONCLUSIONS: Despite significant decline in the number of PWE visiting hospitals, their seizure control and access to ASMs were not affected during the COVID-19 pandemic in India. Risk of COVID-19 infection in PWE is similar to general population.

The Impact of COVID-19 on Epilepsy Care: A Survey of the American Epilepsy Society Membership.

The COVID-19 pandemic has impacted the delivery of care to people with epilepsy (PWE) in multiple ways including limitations on in-person contact and restrictions on neurophysiological procedures. To better study the effect of the pandemic on PWE, members of the American Epilepsy Society were surveyed between April 30 and June 14, 2020. There were 366 initial responses (9% response rate) and 337 respondents remained for analysis after screening out noncompleters and those not directly involved with clinical care; the majority were physicians from the United States. About a third (30%) of respondents stated that they had patients with COVID-19 and reported no significant change in seizure frequency. Conversely, one-third of respondents reported new onset seizures in patients with COVID-19 who had no prior history of seizures. The majority of respondents felt that there were at least some barriers for PWE in receiving appropriate clinical care, neurophysiologic procedures, and elective surgery. Medication shortages were noted by approximately 30% of respondents, with no clear pattern in types of medication involved. Telehealth was overwhelmingly found to have value. Among the limitation of the survey was that it was administered at a single point in time in a rapidly changing pandemic. The survey showed that almost all respondents were affected by the pandemic in a variety of ways.

Did the COVID-19 pandemic silence the needs of people with epilepsy?

The COVID-19 pandemic shook European healthcare systems, with unavoidable gaps in the management of patients with chronic diseases. We describe the impact of the pandemic on epilepsy care in three tertiary epilepsy centres from Spain and Italy, the most affected European countries. The three epilepsy centres, members of the European EpiCARE network, manage more than 5,700 people with epilepsy. In Bologna and Barcelona, the hospitals housing the epilepsy centres were fully converted into COVID-19 units. We describe the reorganization of the clinics and report on the frequency of SARS-CoV-2 in people with epilepsy as well as the frequency of seizures in patients admitted to the COVID units. Finally, we elaborate on critical issues regarding the second phase of the pandemic. The activities related to epilepsy care were reduced to less than 10% and were deprioritized. Discharges were expedited and elective epilepsy surgeries, including vagal nerve stimulator implantations, cancelled. Hospitalizations and EEG examinations were limited to emergencies. The outpatient visits for new patients were postponed, and follow-up visits mostly managed by telehealth. Antiseizure medication weaning plans and changes in vagal nerve stimulator settings were halted. Among the 5,700 people with epilepsy managed in our centres, only 14 tested positive for SARS-CoV-2, without obvious impact on their epilepsy. None of the 2,122 patients admitted to COVID units experienced seizures among the early symptoms. Epilepsy care was negatively impacted by the pandemic, irrespective of COVID-19 epidemiology or conversion of the hospital into a COVID-19 centre. The pandemic did not silence the needs of people with epilepsy, and this must be considered in the planning of the second phase.

Care Delivery for Children With Epilepsy During the COVID-19 Pandemic: An International Survey of Clinicians.

OBJECTIVE: To evaluate the effect of the COVID-19 pandemic on global access to care and practice patterns for children with epilepsy. METHODS: We conducted a cross-sectional, online survey of pediatric neurologists across the world affiliated with the International Child Neurology Association, the Chinese Child Neurology Society, the Child Neurology Society, and the Pediatric Epilepsy Research Consortium. Results were analyzed in relation to regional burden of COVID-19 disease. RESULTS: From April 10 to 24, 2020, a sample of 212 respondents from 49 countries indicated that the COVID-19 pandemic has dramatically changed many aspects of pediatric epilepsy care, with 91.5% reporting changes to outpatient care, 90.6% with reduced access to electroencephalography (EEG), 37.4% with altered management of infantile spasms, 92.3% with restrictions in ketogenic diet initiation, 93.4% with closed or severely limited epilepsy monitoring units, and 91.3% with canceled or limited epilepsy surgery. Telehealth use had increased, with 24.7% seeing patients exclusively via telehealth. Changes in practice were related both to COVID-19 burden and location. CONCLUSIONS: In response to COVID-19, pediatric epilepsy programs have implemented crisis standards of care that include increased telemedicine, decreased EEG use, changes in treatments of infantile spasms, and cessation of epilepsy surgery. The long-term impact of these abrupt changes merit careful study.

Is wearing a face mask safe for people with epilepsy?

Since December 2019, the world has been experiencing a catastrophic pandemic of coronavirus disease (COVID-19) caused by SARS-CoV-2. This virus primarily targets the human respiratory system. Available information suggests that people with epilepsy (PWE) are not at higher risk of being infected by the virus, nor of more severe COVID-19 manifestations, as a result of the epilepsy alone. However, COVID-19 is a serious disease that currently has no effective treatment or vaccine. A face mask is probably effective in preventing the spread of a respiratory pathogen, at least to some extent. So, should we recommend wearing a face mask to all during a pandemic of respiratory infectious disease (eg, COVID-19) without any precautions or exemptions? While concrete evidence is lacking, if we consider that wearing a face mask may simulate hyperventilation, at least to some extent, we would probably avoid recommending this practice indiscriminately to all PWE. On the other hand, in the absence of any proven treatment or vaccine to combat COVID-19, prevention is the best available strategy and it is probably not reasonable to suggest avoid wearing face masks in PWE under any circumstances. Logically, PWE do not need to wear a face mask most of the time, as long as there is no close contact with others, especially during intense physical activities such as exercise. To the contrary, it is probably more advantageous to wear a face mask in crowded locations, with intermittent breaks in safe locations, away from others.

Telemedicine is a useful tool to deliver care to patients with Amyotrophic Lateral Sclerosis during COVID-19 pandemic: results from Southern Italy.

BACKGROUND: Teleneurology is an effective tool for the rapid evaluation of patients in remote locations with a well-established use in stroke and epilepsy. To date its adoption for Amyotrophic Lateral Sclerosis (ALS) care is still in a preliminary stage. We evaluated the feasibility of multidisciplinary assessment of patients with ALS, using telememedicine during the emergency determined by the COVID-19 pandemic. Methods: All patients included in this survey had received a diagnosis of ALS according to international criteria after a complete clinical and paraclinical assessment during 2019. A structured questionnaire was used by the neurologist with the patient or the caregiver. A video interaction was offered but refused by all patients because they did not feel comfortable or did not have smartphone. Results: Out of 31 clinical interviews 8 were completed directly with the patients and 23 with patients' caregivers. In a successive survey, most of patients were satisfied with the neurological interview (85%), the possibility to interact directly with the clinician being at home (85%) and reduction of economic and time costs because they avoided unnecessary travel to the clinic. Most of subjects expressed their willingness to continue to be included in remote evaluation programs (90%). Notably, none of the patients presented index symptoms of Covid-19 infection. Conclusion: Our study indicates that telemedicine is a valid tool to triage patients with ALS to increase practice outreach and efficiency. Delivery of care via telemedicine was effective and successful in people with ALS in the dramatic and sudden crisis determined by Covid-19 outbreak.