Impact of the COVID-19 Pandemic on People with Epilepsy: Findings From the US Arm of the COV-E Study

Abstract found on Wiley Online Library

Objectives: As part of the COVID-19 and Epilepsy (COV-E) global study, we aimed to understand the impact of COVID-19 on the medical care and well-being of people with epilepsy (PWE) in the United States, based on their perspectives and those of their caregivers.

Methods: Separate surveys designed for PWE and their caregivers were circulated from April 2020 to July 2021; modifications in March 2021 included a question about COVID-19 vaccination status.

Results: We received 788 responses, 71% from PWE (n = 559) and 29% (n=229) from caregivers of persons with epilepsy. A third (n = 308) of respondents reported a change in their health or in the health of the person they care for. Twenty-seven percent (n = 210) reported issues related to worsening mental health. Of respondents taking ASMs (n = 769), 10% (n=?78) reported difficulty taking medications on time, mostly due to stress causing forgetfulness. Less than half of respondents received counseling on mental health and stress. Less than half of the PWE reported having discussions with their healthcare providers about sleep, ASMs and potential side effects, while a larger proportion of caregivers (81%) reported having had discussions with their healthcare providers on the same topics. More PWE and caregivers reported that COVID-19 related measures caused adverse impact on their health in the post-vaccine period than during the pre-vaccine period, citing mental health issues as the primary reason.

Significance: Our findings indicate that the impact of the COVID-19 pandemic in the US on people with epilepsy is multifaceted. Apart from the increased risk of poor COVID-19 outcomes, the pandemic has also had negative effects on mental health and self-management. Healthcare providers must be vigilant for increased emotional distress in PWE during the pandemic and consider the importance of effective counseling to diminish risks related to exacerbated treatment gaps.

Epilepsy Management During Difficult Times

Abstract found on John Libbey Eurotext

Major disruption in the delivery of healthcare services can occur in exceptional situations such as natural disasters, conflicts, periods of severe economic hardship, and epidemics. These disruptions typically affect to the greatest extent the most vulnerable segments of the population, including people with epilepsy. Inability to access healthcare services can lead to failure to undergo necessary diagnostic investigations, or to receive needed therapeutic interventions, including epilepsy surgery. Stress and other factors associated with the nature or the cause of the disruption can adversely affect seizure control status, or precipitate the occurrence of psychiatric disorders and other comorbid conditions. Failure to access antiseizure medications is a common occurrence in these situations and can result in loss of seizure control, withdrawal seizures, and status epilepticus. In this article, we provide examples of recent disruptions in healthcare and their implications for people with epilepsy. We discuss the consequences of natural disasters, conflicts, economic sanctions, and focus in greater detail on lessons learnt during the COVID-19 pandemic. We also discuss possible mitigation procedures, focusing in particular on the application of telemedicine to epilepsy care. Finally, we underline the need for governments, healthcare authorities, and international organizations to improve their preparedness to deal with exceptional situations that may arise in the future.

Seizures in Young Stroke Survivors Double Dementia Risk

Article published by Health Day

The onset of seizures in young stroke survivors is associated with more than a doubled risk for developing dementia, according to a study published July 26 in Neurology.

Alain Lekoubou, M.D., from Penn State University in Hershey, and colleagues used the IBM Watson Health MarketScan Commercial Claims and Encounters database to identify 23,680 patients (aged 18 to 60 years) with ischemic strokes or hemorrhagic strokes from 2006 through 2009.

The researchers found that the cumulative incidence of seizure was 6.7 percent for all strokes, 6.4 percent for ischemic strokes, and 8.3 percent for hemorrhagic strokes, while the cumulative incidence of dementia was 1.3, 1.4, and 0.9 percent, respectively. Young patients with stroke who developed seizures had a greater risk for dementia versus those without seizures (adjusted hazard ratios, 2.53, 2.52, and 2.80 for all strokes, ischemic strokes, and hemorrhagic strokes, respectively).

“Dementia is a disease with high economic and social burden,” Lekoubou said in a statement. “Since strokes are occurring in younger people and survival rates are increasing, it is important to understand the long-term effects and determine who is at greatest risk for severe complications like dementia.”

Cost of Brand-Name Epilepsy Drugs Nearly Triples in 8 Years, Study Says

Article published by UPI

Amid the challenges already faced by people with epilepsy, a new study reports another: steadily rising costs for brand-name anti-seizure medications, partly spurred by increased prescriptions for the drug lacosamide. Researchers found the cost of a one-year’s pill supply of brand-name epilepsy drugs skyrocketed by 277% from 2010 to 2018 — from roughly $2,800 a year between 2008 and 2010 to about $10,700 a year by 2018.

By contrast, the cost of a one-year’s pill supply of generic drugs for epilepsy decreased by 42% over the same period, says the study published in Wednesday’s online edition of Neurology, the journal of the American Neurology Association.

According to the study, brand-name drugs represented 79% of epilepsy drug costs, even though they comprised only 14% of prescriptions.

“Even if the patient doesn’t see a high cost if a brand-name medication is covered by insurance, huge brand-name costs still contribute to high U.S. healthcare expenditures,”” Terman said.

Doctors and patients need to be aware of how massively increased costs are for brand-name medications compared with generic equivalents. Dr. Samuel Waller Terman, the study’s lead investigator, told UPI.

“It’s hard!”: Adolescents’ Experience Attending School with Psychogenic Nonepileptic Seizures

Abstract found on PubMed

Adolescents with psychogenic nonepileptic seizures (PNES) face many challenges in the school setting. Researchers have identified school stressors as potential predisposing, precipitating, and perpetuating factors for PNES. However, few researchers have explored the perspectives of adolescents with PNES regarding their experiences of attending school, where they spend much of their time. Therefore, this qualitative study employed content analysis to explore the experience of attending school as an adolescent with PNES. Ten adolescents (100% female, 80% White) were interviewed. With an overwhelming response of “It’s hard!” from respondents, five themes regarding the school experience emerged: stress, bullying, accusations of “faking” seizure events, feeling left out because of the condition, and school-management of PNES. Underlying these themes were expressions of the need for increased understanding from and collaboration among peers, as well as the need for increased understanding from families, healthcare providers, and school personnel including school nurses. Study findings should inform future adolescent PNES research, practice decisions made by healthcare providers in the health and education sectors, education of healthcare and school professionals, and policy development and implementation.

Student Designs Device to Help Detect Seizures

Article published by UGA Today

It started in a high school physics class in Duluth, Georgia, when Ashley Galanti was given the assignment to create something to help people with diseases. Both her mother and brother have epilepsy, so she designed a wearable case holding a mouth guard used to protect people during seizures.

“It pushed the top jaw forward and opened the airway to prevent people from shattering their teeth, biting their tongue or suffocating during a seizure,” said Galanti.

She took the project to the Gwinnett Regional Science/Engineering Fair in 2017 and got third place. However, “People were like, well, you can’t really put the mouth guard in your mouth when you’re having a seizure already.”

And that could have been the end of it.

But Galanti is not the kind of person who gives up.

“We’re working towards the creation of the first-ever sensor that is able to use chemoreception,” she said. The idea is to detect the 11 volatile organic compounds that people release via skin, sweat and saliva before a seizure.

“I’m planning on it being an armband that you wear with a sensor placed at the armpit,” she said. “It’ll be really lightweight so that people who wear it won’t really notice it.”

The device will alert the wearer, but Galanti also wants to integrate it with Bluetooth to connect it with an app to alert family members and/or emergency services. “It would be really revolutionary in helping people who are unable to stop their seizures from occurring, especially when they’re doing something like driving, swimming or cooking.”

Sylvia Edoigiawerie: Researching to Help Expedite Seizure Detection in Critically Ill Newborns

This Black History Month, we spotlight Sylvia Edoigiawerie and the work she is doing in the epilepsy field. Sylvia is an MD-PhD candidate at the University of Chicago Medical Scientist Program. She is currently working with Dr. Wim van Drongelen, a professor of pediatrics and neurology, Dr. Julia Henry, a pediatric epileptologist and Dr. Henry David, a pediatric neurocritical care specialist at Comer Children’s Hospital. Her goal is to create quantitative tools for detecting seizures and monitoring other important EEG activity in critically ill newborns.

Newborns are at a high risk of seizures especially if they experienced ischemic brain injury at birth. Additionally, most infant seizures cannot be detected without EEG, and uncontrolled and undetected seizures can lead to devastating neurologic outcomes. The quicker seizures are detected, the quicker they can be treated. As a result, infants at risk for seizures need to be monitored 24/7 by clinicians and a staff of EEG technicians. This manual monitoring process is slow and resource-intensive especially for under-resourced centers. This is where the tool Sylvia is working in the van Drongelen lab comes in to expedite seizure detection, lessen the time strain on the clinicians, and help find novel EEG patterns that can identify babies most at risk for poor outcomes.

Sylvia has been dedicated to and passionate about translational research since her undergraduate years at University of Maryland, Baltimore County (UMBC). Through the support of the Meyerhoff Scholars Program at UMBC, she discovered she could pursue a career as a physician-scientist. When she is finished with her MD-PhD training, she plans to become a clinician with the goal of taking practices “from bench to bedside” so she can help patients, including those with epilepsy, as quickly as possible. When asked what the most impactful moment has been in her career so far, she graciously replied “Every day I show up, is an impactful moment. Because every day I get to work with a supportive team of super smart clinicians, scientists, and techs, and every day I get to take steps that will hopefully make a difference in a child’s life.”

We are so thankful Sylvia is in the world of medicine and research. With her passion and talent, she will do many great things that will help our community and many others. Through research there is hope.

Opinion Piece: When It Comes to People Like My Daughter, One Size Does Not Fit All

Opinion Piece, published in The New York Times

My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle.

These brutal seizures would continue, poorly controlled, for the next 19 years, roiling her developing brain and necessitating an ever-shifting regimen of medications with punishing side-effects, of surgeries and hospitalizations. More than once, we feared we would lose her.

Lauren’s doctors finally found a cocktail of medications that would work to subdue the seizures, but the battering her brain took from the ordeal left her with significant developmental deficits.

Today, Lauren faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones.

The issue is federal Medicaid funding to states, which helps underwrite residential facilities for people with intellectual disabilities, and the conviction of some advocates and policymakers that larger settings like Misericordia should be discouraged.

Household Poverty, Schooling, Stigma and Quality of Life in Adolescents With Epilepsy in Rural Uganda

Abstract, originally published in Epilepsy and Behavior

Background: Epilepsy remains a leading chronic neurological disorder in Low- and Middle-Income Countries. In Uganda, the highest burden is among young rural people. We aimed to; (i) describe socio-economic status (including schooling), and household poverty in adolescents living with epilepsy (ALE) compared to unaffected counterparts in the same communities and (ii) determine the factors associated with the overall quality of life (QoL).

Methods: This was a cross-sectional survey nested within a larger study of ALE compared to age-matched healthy community children in Uganda. Between Sept 2016 to Sept 2017, 154 ALE and 154 healthy community controls were children were consecutively recruited. Adolescents recruited were frequency and age-matched based on age categories 10-14 and 15-19 years. Clinical history and standardized assessments were conducted. One control participant had incomplete assessment and was excluded. The primary outcome was overall QoL and key variables assessed were schooling status and household poverty. Descriptive and multivariable linear regression analysis were conducted for independent associations with overall QoL.

Results: Mean (SD) age at seizure onset was 8.8 (3.9) years and median (IQR) monthly seizure burden was 2 (1-4). Epilepsy was associated with living in homes with high household poverty; 95/154 (61.7%) ALE lived in the poorest homes compared to 68/153 (44.5%) of the healthy adolescents, p = 0.001. Nearly two-thirds of ALE had dropped out of school and only 48/154 (31.2%) were currently attending school compared to 136/153 (88.9%) of healthy controls, p < 0.001. QoL was lowest among ALE who never attended school (p < 0.001), with primary education (p = 0.006) compared to those with at least secondary education. Stigma scores [mean(SD)] were highest among ALE in the poorest [69.1(34.6)], and wealthy [70.2(32.2)] quintiles compared to their counterparts in poorer [61.8(31.7)], medium [68.0(32.7)] and wealthiest [61.5(33.3)] quintiles, though not statistically significant (p = 0.75). After adjusting for covariates, ALE currently attending school had higher overall QoL compared to their counterparts who never attended school (β = 4.20, 95%CI: 0.90,7.49, p = 0.013). QoL scores were higher among ALE with ≥secondary education than those with no or primary education (β = 10.69, 95%CI: 1.65, 19.72).

Conclusions: Adolescents living with epilepsy (ALE) in this rural area are from the poorest households, are more likely to drop out of school and have the lowest quality of life (QoL). Those with poorer seizure control are most affected. ALE should be included among vulnerable population groups and in addition to schooling, strategies for seizure control and addressing the epilepsy treatment gap in affected homes should be specifically targeted in state poverty eradication programs.

Stress increases susceptibility to pentylenetetrazole-induced seizures in adult zebrafish

Abstract, originally published in Epilepsy & Behavior

Stress is the body’s reaction to any change that requires adaptive responses. In various organisms, stress is a seizure-related comorbidity. Despite the exposure to stressors eliciting aversive behaviors in zebrafish, there are no data showing whether stress potentiates epileptic seizures in this species.

Here, we investigated whether a previous exposure to an intense acute stressor positively modulates the susceptibility to seizures in pentylenetetrazole (PTZ)-challenged zebrafish.

The conspecific alarm substance (CAS) was used to elicit aversive responses (3.5 mL/L for 5 min), observed by increased bottom dwelling and erratic movements. Then, fish were immediately exposed to 7.5 mM PTZ for 10 min to induce seizure-like behaviors. Stress increased the seizure intensity, the number of clonic-like seizure behaviors (score 4), as well as facilitated the occurrence of score 4 episodes by decreasing the latency in which fish reached the score 4. Moreover, fish with heightened anxiety showed increased susceptibility to PTZ, since positive correlations between anxiety- and seizure-like behaviors were found. Overall, since CAS also increased whole-body cortisol levels in zebra fish, our novel findings show a prominent response to PTZ-induced seizures in previously stressed zebrafish. Moreover, we reinforce the growing utility of zebrafish models to assess seizure-related comorbidities aiming to elucidate how stress can affect epileptic seizures in vertebrates.