People with epilepsy (PWE) are particularly vulnerable to the changes in healthcare delivery that were necessitated by the COVID-19 pandemic, but new data show that healthcare providers (HCPs) are also being challenged by the pandemic. In April 2020, the American Epilepsy Society (AES) surveyed its members to better understand the effects of the COVID-19 pandemic on HCPs and the patients they serve. The survey, published in Epilepsy Currents and available at www.aesnet.org, found that almost all of the 337 respondents were affected by the pandemic in some way. “The pandemic has had an exceptional impact on PWE, HCPs, and the use of telehealth to manage PWE,” says Aatif M. Husain, MD, an author of the study.
Seizures & COVID-19
According to the survey, 30% of respondents reported that patients with COVID-19 experienced no significant change in seizure frequency. “Conversely, one-third of respondents reported new onset seizures in patients with the virus who had no prior history of seizures,” says Dr. Husain. While many providers reported that PWE had no change in seizure frequency, about 17% of respondents noted worsening of seizures in PWE with COVID-19. Worsening of seizure frequency was attributed to increased stress, sleep deprivation, and reduced access to pharmacies and medications.
Obtaining & Delivering Epilepsy Care
Concerns were raised about the quality of care provided to PWE during the pandemic in the survey. Approximately 43% of respondents thought PWE received the expected standard of care during the pandemic, but 34% believed care was compromised. “Many respondents felt there were at least some barriers for PWE in receiving appropriate clinical care, testing, and surgery,” Dr. Husain says. “Reasons for these barriers included loss of employment and financial stress, transportation issues, lack of access to telehealth technology, and reluctance to seek care due to fears of viral outbreaks. Respondents also expressed concern about their patients feeling isolated due to the pandemic.”
Care delivery was also affected by limitations imposed by hospitals, clinics, and medical practices, according to Dr. Husain. “Many institutions began restricting or canceling admissions to epilepsy monitoring units,” he says. “HCPs were also hesitant about reopening, and few PWE visited offices even when they were reopened. Fortunately, shortages of antiseizure medication has not appeared to be a major concern during the pandemic.”
The vast majority of HCPs were willing to use telehealth to manage PWE in some capacity (Figure). Many respondents reported that telehealth was more beneficial than in-person clinic encounters due to increased patient access, decreased no-show rates, and improved visit efficiency. Respondents also reported that their recent telemedicine experience demonstrated that while much of their epilepsy care can be completed via telehealth, some situations call for in-person visits for optimal care.
Some PWE were more likely to benefit from telehealth, including those who live far away from clinics, patients with disabilities and who require transportation, and people living in extended care facilities. “However, the most vulnerable PWE may be unable to take full advantage of telehealth services,” says Dr. Husain. “Some PWE lacked high-speed internet access, video-capable devices, and skills needed to use telehealth.”
An important consideration about telehealth is reimbursement, and many respondents wanted advocacy for continued reimbursement for telemedicine visits. “Respondents expressed concern over potential changes in reimbursement models after the pandemic recedes,” Dr. Husain says. “This might lead to discontinued use of telehealth.” Proactively addressing these issues is important for optimal care of PWE since the short-term outlook for the pandemic continues to be concerning.
Fortunately, professional societies—including the AES—are collaborating in various ways to advocate for telehealth for PWE. An example is the recent AES Telehealth Position Statement that accompanied AES comments to CMS on telehealth considerations for PWE.
Impact on Trainees
Dr. Husain says the pandemic’s impact on training residents and fellows may be felt for years to come. “Trainees indicated that the pandemic has harmed their educational experience due to reduced patient volumes and canceled clinics,” he says. “Furthermore, cancellations of interprofessional conferences and educational meetings limited learning and networking and reduced opportunities to present academic work. AES has taken steps to limit the impact of these missed opportunities so we can empower both HCPs and trainees to effectively deliver the best possible care for PWE.”
Albert DVF, Das RR, Acharya JN, et al. The Impact of COVID-19 on epilepsy care: a survey of the American Epilepsy Society membership. Epilepsy Curr. 2020:1535759720956994. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502678/.
American Epilepsy Society. Managing patients with epilepsy during COVID-19: pharmacotherapy-related recommendations. Updated April 17, 2020. Accessed April 25, 2020. Available at: https://www.aesnet.org/about_aes/position_statements/covid-19/delivery-ofcare/covid-pharmacotherapy-epilepsy.
American Epilepsy Society. COVID-19 and epilepsy. Accessed April 27, 2020. Available at: https://www.aesnet.org/about_aes/position_statements/covid-19/home.
American Epilepsy Society. Telehealth Position Statement. September 29, 2020. Accessed October 8, 2020. Available at: https://www.aesnet.org/about_aes/position_statements.
American Epilepsy Society. COVID-19 Training Continuity. Accessed October 7, 2020. Available at: https://www.aesnet.org/about_aes/position_statements/covid-19/training-continuity