Engaging the next generation of epilepsy professionals

Abstract, originally published in Seizure

The importance of engaging the next generation in broad ranging initiatives cannot be overemphasized. This is reflected by a proliferation of publications related to next-generation, training, and healthcare professionals or scientists, with almost 2000 articles published in the last 30 years, showing a marked increase in the previous two decades.

Several multilateral organizations, such as the United Nations, UNESCO and the World Health Organization, have recognized the importance of engaging youth in the global agenda. Accordingly, in 2017 The International League Against Epilepsy (ILAE) created organizational entities focused on epilepsy and the next generation of epilepsy professionals. At the core of these is the ILAE Young Epilepsy Section (YES). Its mission is to create a new generation of epilepsy experts poised to discover and deliver state-of-the-art care for people with epilepsy well into the future, with several initiatives worldwide, including education, research collaborations, and advocacy tasks, among others. The Latin American Summer School on Epilepsy, which turns 15 in 2021, has been a steady source of early career epilepsy professional participating in YES, who are moving forward the epilepsy agenda in Latin America.

The Inside Experience of Epilepsy: An Essay About the Importance of Subjectivity

Abstract, originally published in Seizure

This essay addresses three aspects of the inside experience of epilepsy: i) the high semiological significance of subjective seizure symptoms, ii) the therapeutic consequences, both positive and negative, of subjective seizure experiences, and iii) the importance of recognizing the patient as the ‘inside expert’ of epilepsy.

Subjective symptoms are often not spontaneously reported but ignoring them may be associated with serious risks. They can be experienced as neutral, negative or positive, and this can have important consequences for therapy. Only patients have full and first-hand knowledge of subjective symptoms but an understanding of these symptoms and an adequate response to them requires expert assistance. The inside and outside views of seizures are different but of equal importance. To get the full picture, both are needed to supplement each other.

Can Big Data Guide Prognosis and Clinical Decisions in Epilepsy?

Abstract, originally published in Epilepsia

Big Data is no longer a novel concept in health care. Its promise of positive impact is not only undiminished, but daily enhanced by seemingly endless possibilities. Epilepsy is a disorder with wide heterogeneity in both clinical and research domains, and thus lends itself to Big Data concepts and techniques. It is therefore inevitable that Big Data will enable multimodal research, integrating various aspects of “-omics” domains, such as phenome, genome, microbiome, metabolome, and proteome.

This scope and granularity have the potential to change our understanding of prognosis and mortality in epilepsy. The scale of new discovery is unprecedented due to the possibilities promised by advances in machine learning, in particular deep learning. The subsequent possibilities of personalized patient care through clinical decision support systems that are evidence-based, adaptive, and iterative seem to be within reach.

A major objective is not only to inform decision-making, but also to reduce uncertainty in outcomes. Although the adoption of electronic health record (EHR) systems is near universal in the United States, for example, advanced clinical decision support in or ancillary to EHRs remains sporadic. In this review, we discuss the role of Big Data in the development of clinical decision support systems for epilepsy care, prognostication, and discovery.

Study Finds Lack of Consistent Guidelines and Recommendations for Specialty Care Referral for Patients With Epilepsy

Abstract, originally published in Epilepsy & Behavior

Objective: In epilepsy, patients who receive appropriate care receive treatment that differs substantially from those that do not. Given the need for a more detailed assessment of the role of specialty referral in the care of patients with epilepsy, this systematic literature review identified epilepsy care guidelines and recommendations that specifically address when and why people with epilepsy should be referred to specialty care.

Methods: This study identified recent (in the last 10 years) publications that made best-practice recommendations for referring people with epilepsy to a neurologist or epileptologist. We searched six databases in December 2018: MEDLINE (PubMed), Cochrane Library, ProQuest, Web of Science, CINAHL (Ebsco), Scopus (Elsevier). Search terms included “Epilepsy” OR “Seizures,” “Guideline” OR “Practice Parameter,” and “Referral.”

Results: The 15 full-text articles identified included formal guidelines, summaries of these guidelines, or professional commentary that builds upon existing guidelines. Most of these publications came from the U.K and its National Institute for Health and Care Excellence. Overall, the included recommendations for referral varied considerably both for new-onset and refractory epilepsy. Although these recommendations were not consistent, it is reasonable to refer patients following the failure of 2 anti-seizure medication (ASM) trials.

Significance: Guidelines and informal recommendations are not consistent regarding best practices for specialty care referral for patients with epilepsy. These guidelines and recommendations should consider the context of care in real-world settings and suggest pragmatic approaches that optimize seizure control and functioning.

Cycles of Self-Reported Seizure Likelihood Correspond to Yield of Diagnostic Epilepsy Monitoring

Abstract, originally published in Epilepsia

Objective: Video-electroencephalography (vEEG) is an important component of epilepsy diagnosis and management. Nevertheless, inpatient vEEG monitoring fails to capture seizures in up to one third of patients. We hypothesized that personalized seizure forecasts could be used to optimize the timing of vEEG.

Methods: We used a database of ambulatory vEEG studies to select a cohort with linked electronic seizure diaries of more than 20 reported seizures over at least 8 weeks. The total cohort included 48 participants. Diary seizure times were used to detect individuals’ multiday seizure cycles and estimate times of high seizure risk. We compared whether estimated seizure risk was significantly different between conclusive and inconclusive vEEGs, and between vEEG with and without recorded epileptic activity. vEEGs were conducted prior to self-reported seizures; hence, the study aimed to provide a retrospective proof of concept that cycles of seizure risk were correlated with vEEG outcomes.

Results: Estimated seizure risk was significantly higher for conclusive vEEGs and vEEGs with epileptic activity. Across all cycle strengths, the average time in high risk during vEEG was 29.1% compared with 14% for the conclusive/inconclusive groups and 32% compared to 18% for the epileptic activity/no epileptic activity groups. On average, 62.5% of the cohort showed increased time in high risk during their previous vEEG when epileptic activity was recorded (compared to 28% of the cohort where epileptic activity was not recorded). For conclusive vEEGs, 50% of the cohort had increased time in high risk, compared to 21.5% for inconclusive vEEGs.

Significance: Although retrospective, this study provides a proof of principle that scheduling monitoring times based on personalized seizure risk forecasts can improve the yield of vEEG. Forecasts can be developed at low cost from mobile seizure diaries. A simple scheduling tool to improve diagnostic outcomes may reduce cost and risks associated with delayed or missed diagnosis in epilepsy.

Cross-National Disparities Contribute to Heterogeneity in Patient Outcomes Following Invasive Monitoring

Abstract, originally published in Epilepsia

There is substantial variability in outcomes following invasive monitoring and surgical treatment of drug-resistant epilepsy (DRE). Patients with DRE are uniquely vulnerable to cross-national health care disparities, as their epilepsy is difficult to treat and requires extensive resources. In a large cross-national database of patients undergoing invasive monitoring for epilepsy surgery, we sought to evaluate the association between social, economic, and educational indicators of the country of treatment and patient outcomes following invasive monitoring.

We performed a mixed-effects analysis of an individual patient database of 595 subjects enrolled in 33 studies encompassing 25 neurosurgical centers in 10 countries of invasive monitoring for epilepsy from 1996 to 2019. Upon preliminary univariate analysis, significant nation-level predictors of seizure outcome following either stereoelectroencephalography or subdural electrodes were hospital beds per 100,000 population, physician density, gross domestic product (GDP) growth, male and female educational attainment, and unemployment rate. On multivariate mixed-effects logistic regression, physician density (? = -0.5112, P<.00697) and GDP growth (? = 0.53822, P<.00404) were the only nation-level covariates of significance associated with seizure outcome.

A higher physician density was associated with lesser seizure freedom rates, whereas higher GDP growth was associated with greater seizure freedom rates. Although patient-specific variables were the primary determinant of seizure outcomes, cross-national disparities also contribute to heterogeneities. Our findings highlight the importance of a systems-level dialogue to improve surgical outcomes for DRE patients.

Epilepsy Research News: January 2021

This month’s research news includes announcements about CURE Epilepsy’s Frontiers in Research seminar series, and an announcement from the CDC about an incidence and etiology funding opportunity.

We also share that the NINDS Clinical Trials Methodology Course is accepting applications, and that the deadline to apply to the National Science Foundation Enabling Discovery Through Genomics (EDGE) Program is March 16.

These news items are summarized below.

Research Highlights

CURE Epilepsy’s Frontiers in Research Seminar Series has gone virtual!

As part of our on-going commitment to supporting the research community through these difficult times, we are conducting our research seminar series virtually with the topics below. Mark your calendars!

The virtual Frontiers in Research Seminar Series is sponsored by the Nussenbaum-Vogelstein Family.

Learn more

CDC Epilepsy Incidence and Etiology Funding Opportunity Announcement
Projects are intended to inform incidence and social determinants of epilepsy including risk factors and protective factors that affect epilepsy incidence. Information about epilepsy incidence will provide invaluable information to help better guide interventions or services for preventing epilepsy, treating and rehabilitating people with epilepsy, and minimizing their health disparities and adverse outcomes.

Click here for details. Search opportunity number by RFA-DP-21-004 and SIP 21-007.

Learn More

NINDS Clinical Trials Methodology Course-Application Deadline February 28
The NINDS Clinical Trials Methodology Course (CTMC) is accepting applications for the 2021 cohort. The overarching goal of the CTMC is to help investigators develop scientifically rigorous, yet practical clinical trial protocols. The focus is on investigators who have not previously designed their own prospective, interventional clinical trials.

Learn More

National Science Foundation Enabling Discovery Through Genomics (EDGE) Program-Application Deadline March 16
The goal of the EDGE program is to provide support for genomic research and associated theory, approaches, tools, and infrastructure development to address the mechanistic basis of complex traits in diverse organisms within the context (environmental, developmental, social, and/or genomic) in which they function.

Learn More

Complementary and Alternative Medicine (CAM) for Epilepsy Treatment in the Middle East and North Africa (MENA) Region

Abstract, originally published in Epilepsy Research

Introduction: The aim of this study is to provide the reader with a review on Complementary and Alternative Medicine (CAM) treatment in epilepsy in the Middle East and North Africa (MENA) region, to describe the extent and factors associated with its use among patients with epilepsy (PWE), and to recommend how effectively we will be able to reduce this alarming use.

Material and methods: Retrospective literature search from 1945 to December 2019, regarding CAM use in the MENA region, using electronic databases (PubMed, Scopus, Google Scholar, Web of Science).

Conclusion: The use of CAM and consultation of traditional healers for the treatment of epilepsy has so far been widespread practice for centuries in the MENA region. Lack of health professionals and non-adherence to conventional epilepsy treatment are strongly associated with the use of CAM. Improvement in the level of knowledge of epilepsy among PWE, healthcare professionals, including traditional healers, will educate PWE and their caregivers on potentially unsafe practices and promote adherence to Antiseizure Drugs (ASDs). Additionally, randomized controlled trials are needed to study the role and value of various CAM treatment options in PWEs.

Prevalence of Epilepsy in Bangladesh: Results from a National Household Survey

Abstract, originally published in Epilepsia Open

Objective: To determine the prevalence and types of epilepsy in Bangladesh.

Methods: We conducted a nationwide population-based cross-sectional survey among Bangladeshi population of all ages, except children under one month. We surveyed 9839 participants (urban, 4918; rural, 4920) recruited at their households using multistage cluster sampling. Trained physicians with neurology background confirmed the diagnosis of suspected epilepsy cases identified by interviewer-administered questionnaires. We reported the overall and sex, residence, and age groups-specific prevalence of epilepsy per 1000 populations with 95% confidence interval.

Results: The national prevalence of epilepsy per 1000 was 8.4 (95% CI 5.6-11.1), urban 8.0 (4.6-11.4), and rural 8.5 (5.60-11.5). The prevalence in adult males and females was 9.2 (5.7-12.6) and 7.7 (3.6-11.7), respectively. The prevalence in children aged <18 years (8.2, 3.4-13.0 was similar to adults (8.5 (5.4-11.4). Among all epilepsy cases, 65.1% had active epilepsy. Their (active epilepsy) prevalence was 5.8 (3.5-8.1). Of them, 63.4% were not receiving treatment. Moreover, those who received allopathy treatment, 72.5% had low adherence leading to a high treatment gap.

Significance: Our findings out of this first-ever national survey were similar to other Asian countries. However, the prevalence of active epilepsy and treatment gap were considerably higher. This study serves useful evidence for tailoring interventions aimed to reduce the burden of epilepsy—primarily through targeted community awareness program—and access to antiepileptic treatment in health facilities in Bangladesh.

Availability, Affordability, and Quality of Essential Antiepileptic Drugs in Lao PDR

Abstract, originally published in Epilepsia Open

Objective: Epilepsy is a chronic condition treatable by cost-effective antiepileptic drugs (AEDs), but limited access to treatment was documented. The availability and affordability of good quality of AEDs play a significant role in access to good health care. This study aimed to assess the availability, affordability, and quality of long-term AEDs in Lao PDR (Laos).

Method: A cross-sectional study was performed in both public and private drug supply chains in urban and rural areas in Lao PDR. Data on AEDs availability and price were obtained through drug suppliers. Affordability was estimated as the number of day wages the lowest-paid government employee must work to purchase a monthly treatment. Samples of AEDs were collected, and the quality of AEDs was assessed through Medicine Quality Assessment Reporting Guidelines.

Results: Out of 237 outlets visited, only 50 outlets (21.1% [95% CI 16.1?26.8]) had at least one AED available. The availability was significantly different between urban (24.9%) and rural areas (10.0%), P = .017. Phenobarbital 100 mg was the most available (14.3%); followed by sodium valproate 200 mg (9.7%), phenytoin 100 mg (9.7%), and carbamazepine 200 mg (8.9%). In provincial/district hospitals and health centers, AEDs were provided free of charge. In other healthcare facilities, phenytoin 100 mg and phenobarbital 100 mg showed the best affordability (1.0 and 1.2 day wages, respectively) compared to carbamazepine 200 mg (2.3 days) and other AEDs. No sample was identified as counterfeit, but 15.0% [95% CI 7.1?26.6] of samples were classified as of poor quality.

Significance: We quantified and qualified the various factors contributing to the high treatment gap in Lao PDR, adding to diagnostic issues (not assessed here). Availability remains very low and phenobarbital which is the most available and affordable AED was the worst in terms of quality. A drug policy addressing epilepsy treatment gap would reduce these barriers.