Remarkable gains in the diagnosis, treatment, and prognosis of epilepsy are heading from the lab to the bedside with the aid of artificial intelligence (AI), according to neurologists and computer scientists who spoke at the first international devoted to the subject.
Among the findings from studies presented at the conference in Breckenridge, CO, researchers reported that an AI program can diagnose genetic forms of epilepsy in children 3.6 years sooner than clinicians can, and that a machine learning program can predict with 85 to 90 percent accuracy who will be seizure-free following ablative surgery.
But clinicians and researchers also emphasized that scientific and ethical concerns must be addressed before the new technologies are rolled out, since few AI programs are ready for the clinic.
“We need to come together as a community and begin to discuss what’s out there, set standards, and lay down some guidelines,” said Samden Lhatoo, MD, FRCP, the John P. and Kathrine G. McGovern Distinguished University Professor of Neurology and director of the Texas Comprehensive Epilepsy Program at UTHealth Houston’s McGovern Medical School.
The learning curve for neurologists seeking to understand the advanced mathematical techniques used to construct AI programs for epilepsy can be steep. One of the prize-winning papers presented at the conference, for instance, described what it called a dynamic brain network model to predict seizures.
“Specifically, we use the source-sink (SS) metric to quantify each node by its connectivity properties to other nodes in the network,” stated the paper, whose first author was Amir Hossein Daraie, a PhD student in the biomedical engineering department at Johns Hopkins University School of Medicine.
People with epilepsy could soon get a one-minute warning of an impending seizure with the help of a new medical device.
An epileptic seizure can put a person at risk of injury in everyday situations that most other people take for granted. Often this leads sufferers to avoid common activities such as cycling, swimming or walking up steep inclines.
But wearers of the new device can be reassured that they will get an alert before the onset of a seizure and take necessary precautions. Dr David Blánquez, an engineer, was inspired to invent the earpiece for very personal reasons.
‘We started this project because of my daughter Marina, who has epilepsy,’ Blánquez said.
He had been a robotics researcher but saw the need for people like his daughter to wear a device that could warn them about an approaching convulsion.
The earpiece signals an app on the patient’s mobile phone that a seizure is likely. A family member or caregiver can also be alerted.
The device constantly monitors brain activity using an electroencephalogram, logging key medical information and building up an algorithm that over time gets better at spotting the signs of an impending seizure.
A study published in NeuroToxicology finds occupational (work-related), chronic exposure to pesticides increases risk factors of epilepsy, a neurological disorder causing unprovoked, reoccurring seizures. Mounting evidence over the past years shows that chronic exposure to sublethal (low) levels of pesticides can cause neurotoxic effects or exacerbate preexisting chemical damage to the nervous system. Although the mechanism by which pesticides induce disease development remains unclear, this study suggests environmental pesticide exposure increases seizure risk through mechanisms at molecular or subcellular levels.
Approximately 3.4 million individuals in the U.S. live with epilepsy, and mortality from this disorder is rising nationwide. Over 300 environmental contaminants and their byproducts, including pesticides, are chemicals commonly present in human blood and urine samples and can increase neurotoxicity risk when crossing the brain barrier. Considering half of all epilepsy etiologies (causes) are of idiopathic (unknown) origins, studies like this highlight the importance of understanding how consistent chemical exposure can impact long-term health and disease prognosis. The study notes, “[The] approach to a real-world exposure scenario to pesticides in a large agriculture area over 17 years; […] can be linked to the novel approaches proposed for simulating real-life exposures, thus contributing to a better understanding of the real-life risk associated with long-term exposure to multiple pesticides.”
To determine work-related risk factors associated with epilepsy among farmers and pesticide applicators, researchers performed a case-control study on 19,704 individuals from 2000 to 2016 (17 years) to observe epilepsy cases. Researchers gathered data from Almería (South-Eastern Spain) hospital records and the Centre for Prevention of Occupational Risks. Of the 19,704 individuals, 5,091 have a record of epilepsy. The researchers attribute an increase in epilepsy risk among those working in chemical-intensive, enclosed (indoor) agriculture (high-yield greenhouse crops) compared to chemical-intensive, open-air (outdoor) agriculture (open-air crops). However, this study supports previous findings on the association between epilepsy and pesticide exposure in the general population. Epilepsy risk is greatest among individuals living in rural areas with high pesticide use (e.g., farming regions) and individuals without proper personal protective equipment (PPE), including gloves and masks.
Objectives: Improved quality of life (QoL) is an important outcome goal following epilepsy surgery. This study aims to quantify change in QoL for adults with drug-resistant epilepsy (DRE) who undergo epilepsy surgery, and to explore clinicodemographic factors associated with these changes.
Methods: We conducted a systematic review and meta-analysis using Medline, EMBASE, and Cochrane Central Register of Controlled Trials. All studies reporting pre- and post-epilepsy surgery QoL scores in adults with DRE via validated instruments were included. Meta-analysis assessed the post-surgery change in QoL. Meta-regression assessed the effect of post-operative seizure outcomes on post-operative QoL as well as change in pre- and post-operative QoL scores.
Results: 3,774 titles and abstracts were reviewed and ultimately 16 studies, comprising 1182 unique patients, were included. QOLIE-31 (Quality of Life in Epilepsy Inventory- 31 item) meta-analysis included six studies and QOLIE-89 meta-analysis included four studies. Post-operative change in raw score was 20.5 for QOLIE-31 (95% CI: 10.9–30.1, I2=?95.5) and 12.1 for QOLIE-89 (95% CI: 8.0–16.1, I2=?55.0%). This corresponds to clinically meaningful QOL improvements. Meta-regression demonstrated a higher post-operative QOLIE-31 score as well as change in pre- and post-operative QOLIE-31 score among studies of cohorts with higher proportions of patients with favorable seizure outcomes. At an individual study level, pre-operative absence of mood disorders, better pre-operative cognition, fewer trials of antiseizure medications before surgery, high levels of conscientiousness and openness to experience at the baseline, engagement in paid employment before and after surgery, and not being on antidepressants following surgery were associated with improved post-operative QoL.
Significance: This study demonstrates the potential for epilepsy surgery to provide clinically meaningful improvements in QoL, as well as identifies clinicodemographic factors associated with this outcome. Limitations include substantial heterogeneity between individual studies, and high risk of bias.
Objective: This study was undertaken to characterize the relationship between neighborhood disadvantage and cognitive function as well as clinical, sociodemographic, and family factors in children with new onset idiopathic epilepsy and healthy controls.
Methods: Research participants were 288 children aged 8–18?years with recent onset epilepsy (CWE; n?=?182; mean age?=?12.2?±3.2?years), healthy first-degree cousin controls (HC; n?=?106; mean age?=?12.5±3.0), and one biological or adopted parent per child (n?=?279). All participants were administered a comprehensive neuropsychological battery (reasoning, language, memory, executive function, motor function, and academic achievement). Family residential addresses were entered into the Neighborhood Atlas to determine each family’s Area Deprivation Index (ADI), a metric used to quantify income, education, employment, and housing quality. A combination of parametric and nonparametric (?2) tests examined the effect of ADI by group (epilepsy and controls) across cognitive, academic, clinical, and family factors.
Results: Disadvantage (ADI) was equally distributed between groups (p?=?.63). For CWE, high disadvantage was associated with lower overall intellectual quotient (IQ; p?=?.04), visual naming/expressive language (p?=?.03), phonemic (letter) fluency (p?<?.01), passive inattention (omission errors; p?=?.03), delayed verbal recall (p?=?.04), and dominant fine motor dexterity and speed (p?<?.01). Cognitive status of the HC group did not differ by level of disadvantage (p?=?.40). CWE exhibited greater academic difficulties in comparison to HC (p?<?.001), which were exacerbated by disadvantage in CWE (p?=?.02) but not HC (p?<?.05). High disadvantage was associated with a threefold risk for academic challenges prior to epilepsy onset (odds ratio?=?3.31, p?=?.024).
Significance: Socioeconomic hardship (increased neighborhood disadvantage) exerts a significant adverse impact on the cognitive and academic status of youth with new and recent onset epilepsies, an impact that needs to be incorporated into etiological models of the neurobehavioral comorbidities of epilepsy.
Body image dissatisfaction, a marker for reduced quality of life (QOL), showed elevated levels of prevalence among adults with epilepsy, according to study findings published in Epilepsy & Behavior.
As a known risk factor for reduced QOL, epilepsy and its treatments have been shown to cause physical changes in patients (e.g., skin rashes, unwanted weight changes) that can then lead to detrimental physiological outcomes such as embarrassment, self-consciousness, and body dysmorphia.
“Although related to self-esteem, body image chiefly concerns how we subjectively see our physical bodies—good and bad. Body image dissatisfaction comprises unhappy, unrealistic, and maladaptive evaluations of one’s appearance, and in the general population is associated with a host of adverse emotional outcomes,” said the study authors.
“Together, these physical aspects of epilepsy and its treatment could reasonably be speculated to undermine the body image of people with the disease, yet to date, there has been no such empirical investigation.”
Researchers conducted a prospective analysis of patients with and without epilepsy to further examine the adverse impact of body image dissatisfaction. A total of 63 adults with epilepsy and 48 age- and gender-matched healthy controls were recruited for the analysis from a tertiary epilepsy program at Austin Health, Melbourne, as well as from newsletters and social media.
Participants were assessed via an online survey that examined self-reported demographic and medical information and the following psychological measures: trait (long-term) body image dissatisfaction, state (current) body image dissatisfaction, body image impact from epilepsy, mood, and QOL.
Between-group analyses were conducted to compare measures of body image dissatisfaction, as well as clinical and psychosocial factors. The associations between rates of body image dissatisfaction and depression scores, QOL, and epilepsy-related factors were also examined.
Introduction: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden.
Methods: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden.
Results: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes.
Discussion: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes.
Conclusion: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.
As CURE Epilepsy continues to celebrate our 25th anniversary, I’m reminded again of how far we have come as a community, how we have advanced our understanding of the brain, and how much closer we are to cures. This anniversary has given us a wonderful opportunity to look back on our accomplishments over the years and share with you the impact that your support and donations have made. We will continue to share stories of impact with you in our monthly Discovery emails, in our webinars, and on social media.
If you will indulge me for a moment, I would like to call out the amazing team at CURE Epilepsy that drives this impact on behalf of our community to get us to a world without seizures. By the time you read this, Employee Appreciation Day on March 3rd will have passed, but I have the privilege of working with the most amazing, dedicated team of scientists, fundraisers, communications professionals, and support staff that any leader could ask for. The CURE Epilepsy staff is deeply committed to driving our mission, ensuring that we steward every dollar donated by the community. For those of you who have had the opportunity to interact with these wonderful people, I hope that you share my sentiment.
And if you haven’t had a chance to meet the team, we hope to see you at CURE Epilepsy or community events throughout the year, whether that be at our 25th Anniversary Gala in Chicago this May, at the Purple Day® Expo in Florida later this month, or at one of the many CURE Epilepsy champion events held in your communities
With a commitment to inspire hope and deliver impact.
In this CURE Epilepsy Update, please find information on:
Tickets Now Available for our 25th Anniversary Gala in Chicago
Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.
Take Our Important Community Survey Before it Closes
As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community.
The deadline to submit your feedback is today at 11:59pm CST. We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from individuals living with epilepsy, their loved ones, caregivers, epilepsy researchers, and clinicians in the community. If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.
CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy
Implantable epilepsy devices offer novel avenues to detect and treat seizures by recording seizure activity from neurons (brain cells) in high resolution and stimulating these neurons in a way that halts seizures. In this latest CURE Epilepsy Discovery, we highlight Brian Litt at the University of Pennsylvania who was funded by CURE Epilepsy in 2011, and whose work has led to the development of electrodes and technology that offer incredible precision in recording from and stimulating neurons.
Join Miami University’s PAWS for a Cause student organization for a hybrid (live + virtual), educational event featuring people living with epilepsy and family members sharing their experiences with service dogs. CURE Epilepsy’s CEO, Beth Lewin Dean, will also speak briefly about epilepsy and our organization.
Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies
Did you miss our January webinar? Don’t worry, you can now watch the recording or read the transcript on our website! This webinar discusses the use of individualized antisense oligonucleotide (ASO) treatments for patients with nano-rare epilepsies. ASOs are short strands of modified deoxyribonucleic acids (DNA) that can be developed rapidly and inexpensively and can specifically target and potentially halt the development of disease-causing proteins, thus attempting to change the course of the disease.
Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy
Our next webinar will take place on Wednesday, March 29 at 2 pm ET and will review the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar. Stay tuned for more information.
Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers
CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers, spoke with Fox 11 Los Angeles last week on their segment aimed at raising awareness of epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), and infantile spasms. Additional guests on the segment include CURE Epilepsy community member Francesca Calloway, mother of a child with epilepsy, and an Associate Clinical Professor of Pediatrics at UCLA, Dr. Shaun Hussain.
Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo
The Purple Day® for Epilepsy Awareness Around the World Expo is taking place Saturday, March 25, 2023, from 8:15 am-5 pm ET at Disney’s Contemporary Resort in Florida. Programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to increase epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and support available to them. CURE Epilepsy will present the Purple Day® Talk session “CURE Epilepsy’s Research & Response to the Rare Epilepsy Community” during the expo. Be sure to stop by our booth and say hi!
Register today for The Mind Your Brain conference (which can be attended in person or virtually). This conference is focused on Traumatic Brain Injury (TBI) survivors, families and friends and is designed to share research, insights, therapies and other useful information with attendees, and also provide a forum for attendees to interact and connect with others affected by a brain injury.
After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers
Carmen Zannier shares her 35-year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.
Epilepsy Can’t Stop Young Girl’s Competitive Spirit
When it became clear that Christiane needed special attention and considerations in her training program, her father decided to become her coach. Despite experiencing seizures before races, Christiane has continued to compete at the highest level, making it to the final round of the 2021 Junior Olympics in the 100-meter dash. Even as they struggle to control Christiane’s seizures, her parents continue to support and encourage Christiane’s passion for running, and Christiane’s competitive spirit remains intact as she looks forward to the next Junior Olympic trials.
In support of Black History Month, we are highlighting some of the many Black individuals who are making a meaningful impact within the epilepsy community. Today, we want to share the inspirational story of Michael Platt, a teenage business owner, social entrepreneur, food justice advocate, and baker.
Michael had been an extremely active child, participating in gymnastics and swimming in addition to the “typical” childhood activities of riding his bike and climbing trees until he was diagnosed with epilepsy in fifth grade. When he was diagnosed, he was instructed to limit physical activity and his parents pulled him out of school to homeschool him. With his days entirely different than before and unable to enjoy his normal activities, Michael turned to baking which he had started to fall in love with after baking cakes with his grandmother.
Since Michael was raised in a home of educators and advocates, he already had the drive to challenge injustice. When Michael was gifted a pair of TOMS shoes for Christmas, he was moved to create a baking business, Michaels Desserts, with a similar 1-for-1 model. For each dessert purchased, Michael gives a dessert to someone in need. Michael passes out his cupcakes at homeless shelters and domestic abuse shelters, and partners with other nonprofits focused on addressing food inequity.
Michael recently released a cookbook, Michaels Desserts: Sweets for a Cause, that includes dessert recipes designed around inspirational social justice leaders and activists including Martin Luther King Jr., Harriet Tubman, and more. CURE Epilepsy is honored to have Michael as part of our epilepsy community. He is working to make the world a better place, one dessert at a time.
Objectives: Many children with epilepsy experience seizures at school. School nurses must have the clinical expertise to deliver high-quality, safe care for students with epilepsy. However, in some regions of the U.S. access to interactive, epilepsy evidence-based education programs is limited. The objective of this project was to assess the feasibility of adapting the Epilepsy Foundation’s (EFs) school nurse education program to the ECHO model and evaluate its impact on school nurse knowledge and self-efficacy in managing epilepsy in students with seizures and program satisfaction.
Methods: The EFs educational program for school nurses was adapted to the ECHO model and delivered by a team of interdisciplinary epilepsy specialists via videoconferencing. Retrospective post-program surveys were administered at program completion. Data from 32 participants with complete post-program surveys were used for the analysis of knowledge and confidence. Descriptive statistics and the sign test were conducted.
Results: Participants were 166 school nurses from 13 states. The majority had > 15 years of school nurse experience and served schools in suburban or rural areas. Improvements in knowledge and confidence were reported on most survey items. The highest improvements in self-reported knowledge and confidence were in psychosocial aspects of care, comorbidities, and recognition of nonepileptic events. Program satisfaction was rated as high by over 90% of participants.
Conclusions: Telementoring using the ECHO methodology is a feasible modality to educate and link epilepsy specialists and providers with school nurses nationwide. Findings suggest that attending the MSS ECHO provided an educational and meaningful learning experience. The gains in knowledge and confidence in psychosocial aspects of epilepsy care and comorbidities highlight the importance of the inclusion of this content in educational programs.
