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Around the globe, the COVID-19 pandemic has placed an enormous strain on patients with epilepsy, new research shows.
Almost 30% of respondents to a global survey on the impact of the pandemic on epilepsy patients and services reported mental strain, and 20% reported sleep problems.
These could be triggers for worsening seizures and could signal escalating epilepsy risks, study investigator Arjune Sen, PhD, associate professor and head, Oxford Epilepsy Research Group, John Radcliffe Hospital/University of Oxford, United Kingdom, told Medscape Medical News.
"But in some ways, the most striking finding of our study was that people with epilepsy and their caregivers reported poor communication on epilepsy-associated risks," he said.
The findings were presented at the virtual American Epilepsy Society (AES) 74th Annual Meeting 2020.
Even before the pandemic, people with epilepsy faced significant inequities in care and increased risk for premature mortality, said Sen.
"We wanted to understand the impact that COVID-19 may have on their access to epilepsy services, their epilepsy risks, and their overall well-being," he said.
For the study, the researchers developed three online surveys in 11 languages. The surveys were aimed at adults with epilepsy, their caregivers, and healthcare workers.
The surveys collect data on the use of healthcare services over the past 12 months, as well as on awareness and engagement in risk behaviors and the impact of COVID-19 measures on exposure to seizure risk.
As of mid-November, the investigators had received 1929 responses from 63 countries. Of these, 55% were from people with epilepsy, 15% from healthcare workers, and 29% from caregivers.
Initial results show that 29% of respondents reported changes to their health status during the pandemic, including an increase in mental health problems, such as anxiety, depression, and disrupted sleep, as well as changes in type and length of seizure and increased alcohol consumption.
About 11% of patients with epilepsy reported having more difficulty taking antiseizure medication as prescribed.
The researchers also found that 30% of physicians are currently using telemedicine for 75% of consultations. Prior to COVID-19, 10% of physicians performed patient reviews by telephone for more than 25% of consultations, the researchers note. About a quarter of patients reported that they felt underconfident about the accuracy of an epilepsy diagnosis via telephone.
The pandemic also appears to be affecting clinician-patient communication with respect to the risks for epilepsy; 20% of respondents reported that they had not received any information about their condition over the previous 12 months.
Sen noted that communication regarding sudden unexpected death in epilepsy (SUDEP) has always been low.
Unlike the management of patients with other conditions, such as asthma, there is no regular risk review process for patients with epilepsy, at least not in the United Kingdom. This is improving, but the COVID-19 pandemic "may have thrown things into disarray," said Sen.
Patients with epilepsy may be particularly susceptible to the effects of pandemic-related changes in access to healthcare, said Sen. For one thing, research shows that epilepsy risks can worsen and that epilepsy can become fatal in as little as 3 months, he said.
Sen noted that the pandemic has had a global impact on patients with epilepsy. Governments are deciding how to deploy already limited healthcare resources, particularly in developing countries.
To limit the impact of COVID requires ensuring that patients with epilepsy are aware of and avoid risks associated with seizures, said Sen.
"People should try to sleep well, look after their mental health, not take alcohol to excess, and exercise care so that if a seizure occurs, the risk to themselves and others is minimized," he said.
Commenting for Medscape Medical News, Sheryl Haut, MD, professor of clinical neurology and director of adult epilepsy, Montefiore Medical Center, Albert Einstein College of Medicine, New York City, said pandemic-related challenges to epilepsy care are "widespread" and reach across international healthcare systems.
"Clinicians and patients in the US are facing the same issues" that are described in the study, said Haut.
Drawing on their experience at the epicenter of the pandemic surge, Haut and her colleagues recently wrote two reports on seizure control and other effects of COVID from March to May, including an article published in Epilepsis.
Those local results reflect the international findings, said Haut. "Many patients reported worsened seizures related to stress and poor sleep and greater difficulty obtaining medications," she said.
In addition, as reflected by the UK study, utilization of telemedicine in the United States has surged in the wake of the pandemic, she said.
The study was funded by SUDEP Action and was supported by the Oxford NIHR Biomedical Research Center.
American Epilepsy Society (AES) 74th Annual Meeting 2020: Poster 401. Presented December 6, 2020.
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Cite this: COVID-19's Global Impact on Epilepsy - Medscape - Dec 21, 2020.