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

Abstract

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.

COVID-19 and epilepsy: How are people with epilepsy in Brazil?

“…Difficulties in accessing health care for epilepsy treatment was a common finding in our survey, as well as with ASM supplies, in agreement with data published in other nations regardless of the national income [17,21,24,26,27]. Telemedicine was scarcely provided in our sample compared to other countries [11,[21][22][23][24][25].…”

“…These patients were older, had more frequently severe epilepsy, difficulties with prescription renewals and ASM dispensing, especially in the Brazilian public healthcare system. Seizure worsening was reported in other studies during the pandemic, which ranged from 4-35% of the surveyed population [11,20,23,[25][26][27]29,[30][31][32]. Physical and psychological concerns including beliefs of higher risk of having COVID-19, with new onset use of antidepressants and financial problems were also related to seizure worsening.…”

Prioritizing Seizure Safety and SUDEP Counseling in People With Epilepsy and Their Caregivers During the COVID-19 Pandemic

“…The care of PWE has been revolutionized during the pandemic as well, with the need to establish alternative care delivery models such as telemedicine and telephone consult services and home-based management options such as ambulatory electroencephalograms and home medication delivery. 2 In a recent international survey, most PWE (74.2%) reported satisfaction with either a phone or video consult with their neurologist as an alternative to in-person appointments. 4 Similarly, in a survey of PWE and their clinicians, tele-medicine was found to be both effective and satisfactory in the delivery of chronic outpatient care to PWE.…”

“…Increased seizure frequency, difficulties in obtaining antiseizure medications, cancelled appointments and investigations, alterations in sleep patterns, mood changes, mental health difficulties, and caregiver stress and anxiety have all been reported. 1 , 2 , 3 For PWE who are newly diagnosed and their caregivers, the pandemic has been especially challenging, with limited and/or reduced access to in-person support services and agencies, isolation from family members and friends, and the stress of coping with the uncertainty of a new diagnosis.…”

“…Furthermore, sleep disturbances, lack of adherence to antiseizure medications, increased seizure frequency, and lack of access to health care, all of which have been cited during the COVID pandemic, may have the potential to impact mortality in PWE. 1 , 2 , 3 , 10 Failure to discuss SUDEP among PWE and their caregivers may also lead to feelings of anger, frustration, and distrust of health care professionals.…”