Impact of the COVID-19 Lockdown on Patients and Families with Dravet Syndrome

Summary, originally published in Epilepsia Open

We explored the impact of coronavirus virus 2019 (COVID-19) pandemic on patients with Dravet Syndrome (DS) and their family. With European patient advocacy groups (PAGs), we developed an online survey in 10 languages to question health status, behavior, personal protection, and health services before and after lockdown.

Approximately 538 European PAG members received electronic invitations. Survey ran from 14 April to 17 May 2020 with 219 answers; median age 9 y 10 m. Protection against infection were highly used prior to COVID-19, but 88% added facemask-use according to pandemic recommendations. Only one patient was tested positive for COVID?19. Most had stable epilepsy during lockdown and few families (4%) needed emergency care during lockdown. However, behavior disorder worsened in over one-third of patients, regardless of epilepsy changes. Half of appointments scheduled prior to lockdown were postponed; 12 patients (11%) had appointments fulfilled; 39 (36%) had remote consultations. Responders welcomed remote consultations. Half of responders were unsatisfied with psychological remote support as only few (21 families) received this support. None of the five of patient in clinical trials stopped investigational treatment. Prior adoption of protective measures against general infection might have contributed to avoiding COVID-19 infections. Protocols for the favored remote contact ought to now be prepared.

Evaluating Risk to People with Epilepsy During the COVID-19 Pandemic: Preliminary Findings from the COV-E Study

Abstract, originally published in Epilepsy & Behavior

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.

Recalling the COVID-19 Lockdown: Insights From Patients With Epilepsy

Abstract, originally published in Epilepsy & Behavior

Purpose: The purpose of our study was to explore health changes among people with epilepsy (PWE) during a national COVID-19 lockdown in the context of patients’ clinical characteristics and their experience of receiving epilepsy-related medical services.

Methods: A questionnaire was distributed for adult PWE both online and at a tertiary epilepsy center after the end of a national lockdown in Lithuania. PWE were asked to evaluate their health status during the lockdown and estimate changes in their seizure patterns. Additional questions concerned the accessibility and quality of epilepsy-related consultations.

Results: The study sample consisted of 143 PWE (59 [41.3%] male, mean age 35.1 ± 13.4 years), 94 (65.7%) completed the survey in person, 49 (34.3%) – online. A deterioration in reported physical and mental health during lockdown was observed (Z = -4.604, p < 0.0001 and Z = -4.253, p < 0.0001, respectively) and 22 (15.4%) PWE reported seizure exacerbation. In an ordinal logistic regression model (analysis of data from all participants), baseline seizure frequency (b = 0.413, p = 0.031), reported physical health before lockdown (b = -0.462, p = 0.031) and the ease of proper antiepileptic drug (AED) use during the imposed restrictions (b = -0.535, p = 0.006) were statistically significant variables associated with changes in seizure frequency. The latter were not affected by modifications in AED use (Mann-Whitney U = 1127.0, p = 0.307) irrespective of the data collection method. With teleconsultations being predominant during the lockdown, an overall decline in the quality of epilepsy-related consultations was observed (Z = -2.895, p = 0.004). Among all participants, 46 (32.2%) lost an epilepsy-related consultation or medical service because of the lockdown. This loss was found to be associated with seizure exacerbation (Mann-Whitney U = 1622.5, p = 0.046).

Conclusion: Our study indicates that a national COVID-19 lockdown may have led to worse seizure control and health status in some people with epilepsy. Easy access to antiepileptic drugs and their appropriate use may be especially useful to prevent seizure exacerbation during strict COVID-19 restrictions. The quality and accessibility of remote epilepsy-related consultations was suboptimal and may require further improvement during disruption of in-person services.

People With Epilepsy at Slightly Increased Risk of More Severe COVID-19 Symptoms, Study Suggests

Abstract, originally published in Epilepsy Today

There is a slightly increased risk of hospital admission and death from COVID-19 in people with epilepsy, according to a new study in the British Medical Journal (BMJ).

The research, published in October 2020, looked at risk factors for hospital admissions and death from COVID-19 in 6.08 million adults across England. The data were collected between January 24 and April 30.

Among the risk factors were conditions for which people are advised to shield, and conditions moderately associated with increased risk of complications from COVID-19, according to current NHS guidance.

The evidence from the research by Clift and colleagues showed a small increase in risk of hospital admissions and deaths resulting from COVID-19 in both men and women with epilepsy. The risk appears to be slightly higher still in men than in women.

Among the highest risk factors were conditions like Down’s syndrome and sickle cell disease or severe immunodeficiency, as well as treatments like higher grade chemotherapy.

Seizure Control, Stress, and Access to Care During the COVID-19 Pandemic in New York City: The Patient Perspective

Abstract, originally published in Epilepsia

Objective: Our epilepsy population recently experienced the acute effects of the COVID-19 pandemic in New York City. Herein, we aimed to determine patient-perceived seizure control during the surge, specific variables associated with worsened seizures, the prevalence of specific barriers to care, and patient-perceived efficacy of epilepsy care delivered via telephone and live video visits during the pandemic.

Methods: We performed a cross-sectional questionnaire study of adult epilepsy patients who had a scheduled appointment at a single urban Comprehensive Epilepsy Center (Montefiore Medical Center) between March 1, 2020 and May 31, 2020 during the peak of the COVID-19 pandemic in the Bronx. Subjects able to answer the questionnaire themselves in English or Spanish were eligible to complete a one-time survey via telephone or secure online platform (REDCap).

Results: Of 1212 subjects screened, 675 were eligible, and 177 adequately completed the questionnaire. During the COVID-19 pandemic, 75.1% of patients reported no change in seizure control, whereas 17.5% reported that their seizure control had worsened, and 7.3% reported improvement. Subjects who reported worsened seizure control had more frequent seizures at baseline, were more likely to identify stress and headaches/migraines as their typical seizure precipitants, and were significantly more likely to report increased stress related to the pandemic. Subjects with confirmed or suspected COVID-19 did not report worsened seizure control. Nearly 17% of subjects reported poorer epilepsy care, and 9.6% had difficulty obtaining their antiseizure medications; these subjects were significantly more likely to report worse seizure control.

Significance: Of the nearly 20% of subjects who reported worsened seizure control during the COVID-19 pandemic, stress and barriers to care appear to have posed the greatest challenge. This unprecedented pandemic exacerbated existing and created new barriers to epilepsy care, which must be addressed.

COVID-19 EEG Studies: The Other Coronavirus Spikes We Need to Worry About

Summary, published in Epilepsy Currents

Commentary: By now it is well-known that neurological manifestations occur in ?35% of COVID-19 patients, and potentially in a majority of patients with more severe infections. Results of electroencephalogram (EEG) in these patients are of particular interest: How frequently is epileptiform activity seen in this patient population, and are the underlying risks for epileptiform activity different from other critically ill patients? Are there novel EEG features specific to COVID-19? Is the EEG informative in guiding the understanding of the pathophysiology of the frequently observed altered mental status, or prognosis, in COVID-19?

We are now starting to see the early COVID-19 EEG studies in the literature.

The 3 papers included in this collection are peer-reviewed studies that systematically assessed EEGs in patients with COVID-19, as of July 26, 2020. The study authors, clinicians engaged in the momentous task of treating these patients in high prevalence hospitals, were able to quickly disseminate this information is a noteworthy and commendable achievement.