News Category: Publication

Epidemiology and Disease Burden of Tuberous Sclerosis Complex in France: a Population-Based Study Based on National Health Insurance Data

Abstract found on Wiley Online Library

Objective: Tuberous sclerosis complex (TSC) is a rare multisystem disorder, often associated with epilepsy. This retrospective study aimed to identify patients with TSC, including those with epilepsy, from a French healthcare claims database, and to report incidence, prevalence, and healthcare costs and resource utilization.

Methods: The anonymized French health insurance database (SNDS) covers almost the entire French population. Patients with TSC were identified as having ?1 International Classification of Diseases, Tenth Revision (ICD-10) diagnosis code Q85.1 or a long-term disease (LTD) registration over the inclusion period (2006–2017). Patients with an ICD-10 epilepsy code or who were dispensed ?1 antiseizure medication (ASM) in the same year or after their TSC diagnosis were identified as having TSC with epilepsy. Newly diagnosed patients over the inclusion period constituted the incident cohort. Healthcare costs (patients with recorded costs only), healthcare resource use, and ASM dispensation are reported for patients with 2018 data.

Results: In 2018, 3139 prevalent patients with TSC were identified (crude prevalence, 4.69 per 100,000); the incident cohort comprised 2988 patients (crude incidence, 0.44 per 100,000). Among patients with TSC, 67% (2101/3139) had epilepsy (mean [standard deviation, SD] age: 28.8 [18.8] years; male: 48%). Of patients with epilepsy, total mean (SD) annual healthcare costs were €11413 (27620) per capita (outpatient, 63%; inpatient, 37%), 46% were hospitalized during 2018 (mean [SD], 1.8 [10.9] acute care visits per patient), and 65% visited a hospital specialist. Of patients with epilepsy, medication (mean [SD]: €4518 [12102] per capita) was the greatest contributor (63%) to outpatient costs, and in 2018, 74% were dispensed ?1 different ASM and 9% were dispensed ?4 ASMs.

Significance: TSC with epilepsy was associated with substantial healthcare costs and resource utilization, particularly outpatient and medication costs. Many patients with TSC with epilepsy were prescribed multiple ASMs, suggesting refractory epilepsy.

CURE Epilepsy Update August 2022

Greetings Epilepsy Community,

Though it is hard to believe, it is almost time for kids to return to school. If you are a student with epilepsy, or the caregiver of a student with epilepsy, the start of the school year can bring with it a mixture of excitement and anxiety. To help ease any anxiety, we encourage you to consider creating an IEP (Individualized Education Plan) or reviewing your existing IEP, preparing a Seizure Action Plan that can be shared with your school, and coordinating the availability of any prescription rescue medications with your school district, school nurse, and/or teacher

At CURE Epilepsy, we have heard that students with epilepsy are treated unfairly, told seizures aren’t an excuse for unfinished homework, or are even told they are faking seizures to get attention. The better-informed everyone associated with our children’s education can be about epilepsy, the greater the chances are that we will eliminate the stigma often associated with epilepsy, improve children’s school experience, and keep them safe.

While teachers and IEPs can support and champion students with epilepsy during the school day, there is another hero we need to recognize in the epilepsy community this month who helps day in and day out. This month is Seizure Dog Awareness Month, and we will be highlighting seizure dogs, how they do what they do, and their impact on their owners who have epilepsy on an upcoming Seizing Life® episode, so stay tuned!

Through research there is hope.


In this CURE Epilepsy Update, please find information on:

Unite to CURE Epilepsy

Our Unite to CURE Epilepsy virtual event is back! Join us as we celebrate advances in epilepsy research, inspiring stories from the community, and so much more. Our 3rd annual Unite to CURE Epilepsy event will premiere on September 29th at 7 pm ET/3 pm PT hosted by Chicago ABC7’s Tanja Babich. We look forward to connecting with everyone within the epilepsy community across the country. And stay tuned for more news about how this year’s event will be even more engaging!

Learn More

 

CURE Epilepsy Discovery: Identifying a Promising Novel Treatment for Infantile Spasms

This latest Discovery covers developments on a promising treatment for infantile spasms (IS). Leveraging findings from his work as part of the CURE Epilepsy Infantile Spasms Initiative (2013-2017) and with additional funding from the National Institutes of Health, Dr. John Swann and his team used a previously developed rat model of IS that mirrors many of this disorder’s symptoms to investigate spasms that result from pediatric brain injuries, such as those suffered during a traumatic birth. Standard treatments for IS work in only approximately 50% of patients and can have severe side effects. The need for additional effective therapies drove Dr. Swann and his team to explore a more effective treatment with fewer or, ideally, no side effects.

Read Discovery

 

Prep for Back to School with IEPs

IEPs (Individualized Education Plans) are developed by teams of parents, school administrators, medical professionals, and child advocates in public schools for children who need accommodation. The IEP is a written legal document that maps out the program and special education instructions, supports, and services that will help children thrive and progress in school. Learn about the IEP development process, the different accommodations you can request, and how to advocate for your child’s education.

Learn More

 

Now on TikTok

 

The wait is over! CURE Epilepsy is now bringing epilepsy education to TikTok. Follow along to learn more about epilepsy and help spread the word.

 

CURE Epilepsy on TikTok

 

CURE Epilepsy Champion Highlight

We are fortunate to have so many amazing CURE Epilepsy Champions working with us to fund research to find a cure. Each champion brings their own unique style to their event whether it be a run/walk, a lemonade stand, or an event full of art and music. Check out what some of our CURE Epilepsy Champions have done and maybe even get ideas on what you would do as a CURE Epilepsy Champion.

Learn More

 

 

What’s New from the Seizing Life® Podcast

Inflammation’s Role in Epilepsy and How It Might be Prevented

 

In this episode, epilepsy researcher Dr. Nicholas Varvel discusses the connection between acquired epilepsy and inflammation in the brain.

Watch or Listen

 

Growing Up with Epilepsy Leads to Making Movies About It

 

Listen as filmmaker Miles Levin discusses growing up with epilepsy and turning his experiences into the award-winning short film “Under the Lights”.

Watch or Listen

 

Watch these and all of our upcoming Seizing Life episodes here.

 

The CURE Epilepsy Store

 

Shop the CURE Epilepsy Store and help spread awareness with our CURE Epilepsy merchandise including apparel, car magnets, water bottles, and more.

 

Shop

 

Please mark your calendar for the following key dates in the epilepsy community:

  • August 1-31 – Seizure Dog Awareness Month
  • October 19 – SUDEP Action Day
  • November 1 – International LGS (Lennox-Gastaut Syndrome) Awareness Day
  • November 1-30 – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Avery’s Story

 

Decision Making in Stereotactic Epilepsy Surgery

Abstract found on Wiley Online Library

Surgery can cure or significantly improve both the frequency and intensity of seizures in patients with medication-refractory epilepsy. The set of diagnostic and therapeutic interventions involved in the path from initial consultation to definitive surgery is complex and includes a multidisciplinary team of neurologists, neurosurgeons, neuroradiologists, and neuropsychologists, supported by a very large epilepsy-dedicated clinical architecture. In recent years, new practices and technologies have emerged that dramatically expand the scope of interventions performed: stereoelectroencephalography has become widely adopted for seizure localization; stereotactic laser ablation has enabled more focal, less-invasive, destructive interventions; and new brain stimulation devices have unlocked treatment of eloquent foci and multifocal-onset etiologies. This article articulates and illustrates the full framework for how epilepsy patients are considered for surgical intervention, with particular attention given to stereotactic approaches.

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.

Post-Operative Progression of Brain Metastasis is Associated with Seizures

Abstract found on Wiley Online Library

Seizures in patients with brain metastases have an impact on morbidity and quality of life. The influence of tumor growth on the risk of seizures in these patients is not well defined.

In this cohort study, we evaluated adult patients from the University Hospital Zurich following resection of brain metastases from solid tumors, with or without preoperative seizures, at three, six, nine and 12 months postoperatively. Brain MRI was assessed for tumor progression using the Response Assessment in Neuro-Oncology criteria. The quarterly risk of unprovoked seizures was modelled with mixed effects logistic regression.

We analyzed 444 timeframes in 220 patients. Progression of brain metastases was independently associated with seizures during the respective quarterly follow-up period (odds ratio 3.9, 95% confidence interval 1.3-11.3, p=0.014). Complete resection of brain metastases was associated with a lower risk of seizures (odds ratio 0.2, 95% confidence interval 0.04-0.7, p=0.015).

Postoperative progression of brain metastases quadrupled the risk of seizures, therefore vigorous follow-up may be useful to identify tumor progression and gauge the risk of seizures. The identification of patients at high seizure risk may have implications on treatment decisions and influence aspects of daily life. Breakthrough seizures may indicate brain metastases progression.

Genetic Interaction Between Scn8a and Potassium Channel Genes Kcna1 and Kcnq2

Abstract found on Wiley Online Library

Voltage-gated sodium and potassium channels regulate the initiation and termination of neuronal action potentials. Gain-of-function mutations of sodium channel Scn8a and loss-of-function mutations of potassium channels Kcna1 and Kcnq2 increase neuronal activity and lead to seizure disorders. We tested the hypothesis that reducing expression of Scn8a would compensate for loss-of-function mutations of Kcna1 or Kcnq2. Scn8aexpression was reduced by administration of an antisense oligonucleotide (ASO). This treatment lengthened survival of the Kcn1a and Kcnq2 mutants, and reduced seizure frequency in the Kcnq2 mutant mice. These observations suggest that reduction of SCN8Amay be therapeutic for genetic epilepsies resulting from potassium channel mutations.

Atrophy of the Hippocampal CA1 Subfield Relates to Long-Term Forgetting in Focal Epilepsy

Abstract found on Wiley Online Library

Objective: The mechanisms underlying accelerated long-term forgetting (ALF) in patients with epilepsy are still under investigation. We examined the contribution of hippocampal subfields and their morphology to long-term memory performance in patients with focal epilepsy.

Methods: We prospectively assessed long-term memory and performed magnetic resonance imaging in 80 patients with focal epilepsy (61 with temporal lobe epilepsy and 19 with extratemporal lobe epilepsy) and 30 healthy controls. The patients also underwent electroencephalography recording. Verbal and visuospatial memory was tested 30 seconds, 10 minutes, and 1 week after learning. We assessed the volumes of the whole hippocampus and seven subfields and deformation of the hippocampal shape. The contributions of the hippocampal volumes and shape deformation to long-term forgetting, controlling for confounding factors, including the presence of interictal epileptiform discharges, were assessed by multiple regression analyses.

Results: Patients with focal epilepsy had lower intelligence quotients and route recall scores at 10 minutes than controls. The focal epilepsy group had smaller volumes of both the right and left hippocampal tails than the control group, but there were no significant group differences for the volumes of the whole hippocampus or other hippocampal subfields. Multiple regression analyses showed a significant association between the left CA1 volume and the 1-week story retention (? = 7.76; Bonferroni-corrected P = 0.044), but this was not found for the whole hippocampus or other subfield volumes. Hippocampal shape analyses revealed that atrophy of the superior-lateral, superior-central, and inferior-medial regions of the left hippocampus, corresponding to CA1 and CA2/3, was associated with the verbal retention rate.

Significance: Our results suggest that atrophy of the hippocampal CA1 region and its associated structures disrupts long-term memory consolidation in focal epilepsy. Neuronal cell loss in specific hippocampal subfields could be a key underlying cause of accelerated long-term forgetting in patients with epilepsy.

Antiseizure Medication and Perceived “Fair” Cost Allocation: a Factorial Survey Among Neurologists, Persons with Epilepsy, Their Relatives and a Control Group

Abstract found on Wiley Online Library

Objective: As resources are limited in modern healthcare systems, the decision on the allocation of expensive drugs can be supported by a public consent. This study examines how various factors influence subjectively perceived “fair” pricing of antiseizure medication (ASM) among four groups including physicians, persons with epilepsy (PWE), their relatives and a control group.

Methods: We conducted a factorial survey. Vignettes featured a fictional PWE receiving a fictional ASM. The characteristics of the fictional PWE, ASM and epilepsy varied. Participants were asked to assess the subjectively appropriate annual cost of ASM treatment per year for each scenario.

Results: 57 PWE (age 37.7 ±?12.3, 45.6 % females), 44 relatives (age 48.4 ±?15.7, 51.1 % females), 46 neurologists (age 37.1 ±?9.6, 65.2 % females) and 47 persons in the control group (age 31.2 ±?11.2, 68.1 % females) completed the questionnaire. The amount of money that respondents were willing to spend for ASM-treatment was higher than currently needed in Germany and increased with disease severity among all groups. All groups except for PWE accepted higher costs of a drug with better seizure control. Physicians and the control group, but not PWE and their relatives, tended to do so also for minor or no side effects. Physicians reduced the costs for unemployed patients and the control group spent less money for older patients.

Significance: Antiseizure medication effectiveness appears to justify higher costs. However, the control group attributed less money to older people with epilepsy and physicians allocated fewer drug costs to unemployed people with epilepsy.

A Cross-Sectional Study of COVID-19 Vaccination Patterns Among Patients with Epilepsy in Hong Kong

Abstract found on Wiley Online Library

Objective: As Hong Kong faced the 5th wave of the COVID-19 pandemic, the facilitators and hurdles towards effective vaccination is important for healthcare professionals to understand the vaccination gap among patients with epilepsy.

Methods: A cross-sectional, pragmatic study of COVID-19 vaccination was performed at a tertiary epilepsy centre with regards to patterns of vaccination and any unusually high rate of adverse events. Patients having recent visits at the epilepsy centre (4 months) had their anonymized electronic linkage records examined 12 months after the inception of vaccination program for types of vaccines, seizure demographics, and adverse events following immunization(AEFI).

Results: 200 patients with epilepsy and their anonymized data were analyzed. The vaccine uptake was approximately 60% of that of the general population. Twice as many patients with epilepsy chose to receive mRNA vaccine as compared with inactivated vaccine. The proportion of patients who kept up-to-date with all available dosing was 7%. Patients with epilepsy with genetic aetiology were least likely to receive vaccination (13/38, 34%, p=0.02). There was no unreasonably high rate of unacceptable side effects after vaccination among patients with epilepsy. Only 3 patients reported worsening of seizures without meeting the criteria for AEFI. Refractory epilepsy, allergy to antiseizure medications and elder age (>=65) did not confer any significant difference in vaccination patterns or adverse effects.

Significance: A vaccination gap exists among epilepsy patients which calls for actionable strategies for improving vaccine uptake, including education and outreach programs.

Febrile Seizures Lead to Prolonged Epileptiform Activity and Hyperoxia That When Blocked Prevents Learning Deficits

Abstract found on Wiley Online Library

Objective: In adult brain tissue oxygen levels typically remain in the normoxic zone but status epilepticus results in hyperoxia whereas brief self-terminating seizures lead to postictal hypoxia. The dynamic changes in oxygen levels and the underlying mechanisms are unknown in juveniles with febrile seizures.

Methods: Eight-day old female and male rat pups were implanted with an electrode and oxygen sensing optode in the hippocampus and then received once daily injections of lipopolysaccharide for 4?days to induce an immune response. Local partial pressure of oxygen (pO2) and local field potentials were recorded before, during and after a heat-induced febrile seizure. Separate groups of pups received injections of vehicle or drugs targeting cyclooxygenase (COX)-1, COX-2, L-type calcium channels (LTCCs), CB1 and transient receptor potential vanilloid-1 (TRPV1) receptors prior to febrile seizure induction to determine pO2 mechanisms. Following febrile seizures, a subset of pups were raised to young adulthood then tested for learning impairments using the NOR task.

Results: Febrile seizures resulted in predictable oxygen dynamics that were related to behavioral seizures and epileptiform activity. During a behavioral seizure pO2 rapidly increased, rapidly decreased, and then returned to near baseline. When the behavioral seizure terminated, oxygen levels climbed into the hyperoxic zone during a time of prolonged epileptiform activity. When epileptiform activity terminated oxygen levels slowly returned to baseline.

A COX-1 antagonist prevented hyperoxia whereas a COX-2 antagonist did not. An LTCC antagonist exacerbated hyperoxia. Boosting levels of an endocannabinoid also exacerbated hyperoxia whereas blocking CB1 receptors and TRPV1 receptors reduced hyperoxia. Inhibiting TRPV1 receptors during a febrile seizure prevented learning deficits in young adult female rats.

Significance: Brain oxygenation during and following a febrile seizure has a distinct pattern and multiple mechanisms. Brain oxygen dynamics may be an important consideration in the development of treatments for febrile seizures.