Evaluating risk to people with epilepsy during the COVID-19 pandemic: Preliminary findings from the COV-E study

Abstract

The COVID-19 pandemic has caused global anguish unparalleled in recent times. As cases rise, increased pressure on health services, combined with severe disruption to people's everyday lives, can adversely affect individuals living with chronic illnesses, including people with epilepsy. Stressors related to disruption to healthcare, finances, mental well-being, relationships, schooling, physical activity, and increased isolation could increase seizures and impair epilepsy self-management. We aim to understand the impact that COVID-19 has had on the health and well-being of people with epilepsy focusing on exposure to increased risk of seizures, associated comorbidity, and mortality. We designed two online surveys with one addressing people with epilepsy directly and the second for caregivers to report on behalf of a person with epilepsy. The survey is ongoing and has yielded 463 UK-based responses by the end of September 2020. Forty percent of respondents reported health changes during the pandemic (n = 185). Respondents cited a change in seizures (19%, n = 88), mental health difficulties (34%, n = 161), and sleep disruption (26%, n = 121) as the main reasons. Thirteen percent found it difficult to take medication on time. A third had difficulty accessing medical services (n = 154), with 8% having had an appointment canceled (n = 39). Only a small proportion reported having had discussions about epilepsy-related risks, such as safety precautions (16%, n = 74); mental health (29%, n = 134); sleep (30%, n = 140); and Sudden Unexpected Death in Epilepsy (SUDEP; 15%, n = 69) in the previous 12 months. These findings suggest that people with epilepsy are currently experiencing health changes, coupled with inadequate access to services. Also, there seems to be a history of poor risk communication in the months preceding the pandemic. As the UK witnesses a second COVID-19 wave, those involved in healthcare delivery must ensure optimal care is provided for people with chronic conditions, such as epilepsy, to ensure that avoidable morbidity and mortality is prevented during the pandemic, and beyond.

Keywords: Chronic illness; Coronavirus; Mental health; SUDEP; Seizures.

Fig. 1

Geographical location of survey responses by postal code Survey responses were received from almost all locations in the United Kingdom with a preponderance of responses from the south of England and the Midlands. Created using datawrapper.de.

Fig. 2

Age demographics of UK participants, both people with epilepsy and caregivers, represented as percentage of total respondents. The surveys were mainly completed by younger people. The age specified is of the person with epilepsy. Only people older than 18 could complete the survey themselves. The under-18 years category consists of caregivers completing the caregiver surveys for children with epilepsy.

Fig. 3

Cited reasons for difficulties in ASM adherence and concordance as reported in the caregivers and people with epilepsy surveys, respectively A larger proportion of respondents in the people with epilepsy survey reported difficulties in adhering to ASM medication compared to responses from the caregiver survey (total n = 57). Changes in everyday routine was cited as the most common cause of nonadherence in both surveys, followed by stress or worry resulting in forgetfulness.

Fig. 4

Number of people with epilepsy and caregivers who reported difficulties in accessing healthcare stratified by service type A total of 154 respondents reported difficulties accessing healthcare during phase 1 of the COVID-19 pandemic. Respondents were able to answer stating that they had difficulty with more than one aspect of health care and so raw numbers of respondents are presented.

Fig. 5

Summary of responses relating to discussion of specific epilepsy-related factors. Respondents were asked whether they had, where relevant, discussed specific aspects relating to epilepsy with a clinician in the past twelve months. Many of these data will relate to prior to the pandemic demonstrating that discussion about comorbidity, sleep, SUDEP, and other elements relating to the holistic care of people with epilepsy are not well discussed even outside of the changes to healthcare that COVID-19 has imposed.