Epilepsy Community Research Articles

Establishing a learning healthcare system to improve health outcomes for people with epilepsy

ObjectiveTo describe the organization of the Epilepsy Learning Healthcare System (ELHS), a network that aims to improve care outcomes for people with epilepsy (PWE). Materials and MethodsPatients and family partners, providers, researchers, epidemiologists, and other leaders collaborated to recruit epilepsy centers and community services organizations into a novel learning network. A multidisciplinary Coordinating Committee developed ELHS governance and organizational structure, including four key planning Cores (Community, Clinical, Quality Improvement, and Data). Through Quality Improvement (QI) methodology grounded in the Institute for Healthcare Improvement (IHI) model, including iterative Plan-Do-Study-Act (PDSA) rapid learning cycles and other learning and sharing sessions, ELHS equipped epilepsy centers and community organizations with tools to standardize, measure, share, and improve key aspects of epilepsy care. The initial learning cycles addressed provider documentation of seizure frequency and type, and also screening for medication adherence barriers. Rapid learning cycles have been carried out on these initial measures in both clinical centers and community-based settings. Additional key measures have been defined for quality of life, screening, and treatment for mental health and behavioral comorbidities, transition from pediatric to adult care, counseling for women and girls living with epilepsy, referral for specialty care, and prevention and treatment of seizure clusters and status epilepticus. ResultsIt is feasible to adopt a learning healthcare system framework in epilepsy centers and community services organizations. Through structured collaboration between epilepsy care providers, community support organizations, PWE, and their families/caregivers we have identified new opportunities to improve outcomes that are not available in traditional care models.

Brains, complex systems and therapeutic opportunities in epilepsy

The treatment of epilepsy remains extremely challenging for the thirty percent of people that do not become seizure free. This is despite the introduction of multiple new drugs over that last several decades, highlighting the need for new approaches to identifying novel therapeutic strategies. Conceptualizing the brain as a complex adaptive system and applying the tools that are used in addressing such systems provides an opportunity for expanding the space in which to search for new therapies. Epilepsy has long been considered a network disease at the level of whole brain connectivity, but the application of the concepts to gene and protein expression networks as well as to the dynamic behaviors of microcircuits has been underexplored. These levels of the brain complex adaptive system will be reviewed and a case made for the epilepsy community to embrace these concepts in order to reap to enormous potential rewards.

Capturing seizures in clinical trials of antiseizure medications for KCNQ2-DEE.

Literature review of patients with KCNQ2 developmental and epileptic encephalopathy (KCNQ2‐DEE) reveals, based on 16 reports including 139 patients, a clinical phenotype that includes age‐ and disease‐specific stereotyped seizures. The typical seizure type of KCNQ2‐DEE, focal tonic, starts within 0‐5 days of life and is readily captured by video‐electroencephalography VEEG for clinical and genetic diagnosis. After initial identification, KCNQ2‐DEE seizures are clinically apparent and can be clearly identified without the use of EEG or VEEG. Therefore, we propose that the 2019 recommendations from the International League against Epilepsy (ILAE), the Pediatric Epilepsy Research Consortium (PERC), for capturing and recording seizures for clinical trials (Epilepsia Open, 4, 2019, 537) are suitable for use in KCNQ2‐DEE‒associated antiseizure medicine (ASM) treatment trials. The ILAE/PERC consensus guidance states that a caregiver‐maintained seizure diary, completed by caregivers who are trained to recognize seizures using within‐patient historical recordings, accurately captures seizures prospectively in a clinical trial. An alternative approach historically endorsed by the Food and Drug Administration (FDA) compares seizure counts captured on VEEG before and after treatment. A major advantage of the ILAE/PERC strategy is that it expands the numbers of eligible patients who meet inclusion criteria of clinical trials while maintaining accurate seizure counts (Epilepsia Open, 4, 2019, 537). Three recent phase 3 pivotal pediatric trials investigating ASMs to treat syndromic seizures in patients as young as 2 years of age (N Engl J Med, 17, 2017, 699; Lancet, 21, 2020, 2243; Lancet, 17, 2018, 1085); and ongoing phase 2 open‐label pediatric clinical trial that includes pediatric epileptic syndromes as young as 1 month of age (Am J Med Genet A, 176, 2018, 773), have already used caregiver‐maintained seizure diaries successfully. For determining the outcome of a KCNQ2‐DEE ASM treatment trial, the use of a seizure diary to count seizures by trained observers is feasible because the seizures of KCNQ2‐DEE are clinically apparent. This strategy is supported by successful precedent in clinical trials in similar age groups and has the endorsement of the international pediatric epilepsy community.

High-Frequency Oscillations in Epilepsy: What Have We Learned and What Needs to be Addressed.

For the past 2 decades, high-frequency oscillations (HFOs) have been enthusiastically studied by the epilepsy community. Emerging evidence shows that HFOs harbor great promise to delineate epileptogenic brain areas and possibly predict the likelihood of seizures. Investigations into HFOs in clinical epilepsy have advanced from small retrospective studies relying on visual identification and correlation analysis to larger prospective assessments using automatic detection and prediction strategies. Although most studies have yielded promising results, some have revealed significant obstacles to clinical application of HFOs, thus raising debate about the reliability and practicality of HFOs as clinical biomarkers. In this review, we give an overview of the current state of HFO research and pinpoint the conceptual and methodological issues that have hampered HFO translation. We highlight recent insights gained from long-term data, high-density recordings, and multicenter collaborations and discuss the open questions that need to be addressed in future research.

Putting the network to work: Learning networks in rapid response situations.

IntroductionThe rapid response to COVID‐19 has necessitated infrastructural development and reorientation in order to safely meet patient care needs.MethodsA qualitative case study was constructed within a larger ethnographic field study. Document collection and fieldnotes and recordings from nonparticipant observation of network activities were compiled and chronologically ordered to chart the network's response to changes in epilepsy care resulting from COVID‐19 and the rapid transition to telemedicine.ResultsThe network's response to COVID‐19 was characterized by a predisposition to action, the role of sharing as both a group practice and shared value, and the identification of improvement science as the primary contribution of the group within the larger epilepsy community's response to COVID‐19. The findings are interpreted as an example of how group culture can shape action via a transparent and mundane shared infrastructure.ConclusionsThe case of one multi‐stakeholder epilepsy Learning Network provides an example of the use of infrastructure that is shaped by the group's culture. These findings contribute to the development of a social theory of infrastructure within Learning Health Systems.

Progress report on new antiepileptic drugs: A summary of the Fifteenth Eilat Conference on New Antiepileptic Drugs and Devices (EILAT XV). I. Drugs in preclinical and early clinical development.

Since 1992, the Eilat Conferences have provided a forum for all stakeholders in the epilepsy community to appraise the latest data on new antiepileptic drugs and emergency seizure treatments, including, in recent years, updates on progress with the development of novel monitoring and therapeutic devices. Because of the COVID-19 pandemic, the Fifteenth Eilat Conference on New Antiepileptic Drugs and Devices (EILAT XV) was held as a fully virtual conference on July 27-30, 2020 for the sessions on drugs and on August 3, 2020 for the sessions on devices, and was attended during the 5 days by >500 participants from 63 countries. This progress report summarizes key preclinical and initial (phase 1) clinical data on eight investigational treatments that are currently in early development, including 2-deoxy-D-glucose, GAO-3-02, JNJ-40411813, NBI-921352, NTX-001, sec-butylpropylacetamide, XEN1101, and XEN496. This report provides an overview of current scenarios in the area of treatment discovery and development. The information presented illustrates a variety of innovative strategies, including exploration of compounds with novel mechanisms of action, transplantation of interneurons into epileptogenic brain regions, and the targeting of rare, previously neglected syndromes.

Assessing the risk of seizures with chloroquine or hydroxychloroquine therapy for COVID-19 in persons with epilepsy

BackgroundThe goal of this systematic review is to assess the published literature for seizure risk with chloroquine or hydroxychloroquine therapy in persons with and without epilepsy. With the COVID-19 pandemic, there is a desperate need for treatment against the SARS CoV-2 virus. Chloroquine or hydroxychloroquine is one proposed medication that has received substantial public attention. However, the package insert states that these medications may provoke seizures in patients with epilepsy, and this has resulted in increased questions and anxiety in the epilepsy community. MethodsPubMed (1970 to March 27, 2020) and the Embase (1970 to March 27, 2020) were searched with the terms chloroquine or hydroxychloroquine and seizure or epilepsy, convulsions, or status epilepticus. Selected studies were reviewed, and the adverse drug reaction was classified. ResultsOnly eleven out of 31 studies were deemed eligible for systematic analysis. For chloroquine, eligible studies were- one prospective study(n = 109), two case series(n = 6), and six case reports. The dose of chloroquine ranged between 100−500 mg/day, except in one patient with a seizure, who was after taking 1000 mg. For hydroxychloroquine, there was one prospective observational study(n = 631) and one case report. The clinical trials failed to find any significant relation between seizures and chloroquine or hydroxychloroquine. ConclusionAlthough the package insert describes an increased risk of seizure, the systematic review highlights that such a statement is not supported by class I evidence. Clinicians, therefore, need to understand that data regarding this specific topic is limited to case series and case reports. There is no substantial evidence to suggest that these medications can increase seizure risk.

Epigenetics explained: a topic "primer" for the epilepsy community by the ILAE Genetics/Epigenetics Task Force.

Epigenetics refers broadly to processes that influence medium to long-term gene expression by changing the readability and accessibility of the genetic code. The Neurobiology Commission of the International League Against Epilepsy (ILAE) recently convened a Task Force to explore and disseminate advances in epigenetics to better understand their role and intersection with genetics and the neurobiology of epilepsies and their co-morbidities, and to accelerate translation of these findings into the development of better therapies. Here, we provide a topic primer on epigenetics, explaining the key processes and findings to date in experimental and human epilepsy. We review the growing list of genes with epigenetic functions that have been linked with epilepsy in humans. We consider potential practical applications, including using epigenetic signals as biomarkers for tissue- and biofluid-based diagnostics and the prospects for developing epigenetic-based treatments for epilepsy. We include a glossary of terms, FAQs and other supports to facilitate a broad understanding of the topic for the non-expert. Last, we review the limitations, research gaps and the next challenges. In summary, epigenetic processes represent important mechanisms controlling the activity of genes, providing opportunities for insight into disease mechanisms, biomarkers and novel therapies for epilepsy.

Seizure detection devices and health-related quality of life: A patient- and caregiver-centered evaluation

IntroductionThe unpredictability of epilepsy has a severe impact on health-related quality of life (HR-QOL) for people with epilepsy. Seizure detection devices have the potential to improve HR-QOL by improving seizure safety, reducing caregiver hypervigilance, and reducing seizure anxiety. Emerging data have led to an improved understanding of characteristics that promote acceptability of detection devices for people with epilepsy and caregivers. However, whether usage of seizure detection devices is associated with clinically meaningful improvement in anxiety and HR-QOL remains poorly understood. MethodsWe analyzed cross-sectional survey data collected first-hand from 371 people with epilepsy and caregivers on seizure detection device and HR-QOL using an enriched population of electronic seizure diary users. Metrics related to quality of life and anxiety reduction were compared between users and nonusers of seizure detection devices. ResultsCompared with nonusers of seizure detection devices, device users were significantly more likely to have been impacted by epilepsy in multiple HR-QOL domains, including anxiety, mood, emotional regulation/aggression, speech/language, sleep quality, social life, activities of daily living, independence, and education/academic potential. The majority (80.2%) of people using seizure detection devices experienced moderate or greater anxiety reduction from seizure detection device usage, while 11.1% reported that detection devices did not help at all with anxiety. Despite potential benefit, seizure detection devices were used only by a minority (21.8%) of people with epilepsy surveyed, and usage tended to be skewed toward younger patient age, higher income, and caregivers. There was no significant difference in overall HR-QOL between users and nonusers. ConclusionsSeizure detection devices provide moderate or greater anxiety reduction among the majority of people with epilepsy and their caregivers, but current translatability into improvements in overall HR-QOL may be limited. Affordability and technological support are potential barriers to maximizing benefit equally among the epilepsy community. These considerations may be useful to help guide future device development and inform patient–clinician discussions on device usage and HR-QOL.

ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology

The International League Against Epilepsy (ILAE) classification of the epilepsies has been updated to reflect the gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989. As a critical tool for the practicing clinician, epilepsy classification must be relevant and dynamic to changes in thinking, yet robust and translatable to all areas of the globe. Its primary purpose is for the clinical diagnosis of patients but it is also critical for epilepsy research, development of antiepileptic treatment and communication around the world. The new classification is based on a draft document submitted for public comments in 2013, which was revised to incorporate extensive feedback from the international epilepsy community over several rounds of consultation. It consists of three levels starting with seizure type, where it is assumed that the epileptic seizures of the patient are defined by the new 2017 ILAE seizure classification. After diagnosis of the seizure type, the next step is the diagnosis of the epilepsy type, which includes focal epilepsy, generalized epilepsy, combined generalized and focal epilepsy and also an unclassified epilepsy group. At the third level the disease is assigned to a specific epilepsy syndrome. The new classification incorporates etiology at each stage, emphasizing the need to consider etiology at each step of the diagnosis, as it often carries significant treatment implications. The various etiologies can be assigned to six subgroups, defined with respect to the potential therapeutic consequences. New terminology is introduced, such as developmental and epileptic encephalopathy. The term benign is replaced by the terms self-limiting and pharmacoresponsive, to be used where appropriate. It is hoped that this new framework will assist in improving epilepsy care and research in the twenty-first century.

Therapeutic use of medicinal cannabis in difficult to manage epilepsy.

Intractable epilepsy is currently defined by the International League Against Epilepsy as failure of adequate trials of two tolerated and appropriately chosen antiepileptic drugs (AED) to achieve sustained seizure freedom 1. Approximately 33% of adults and 20% of children with epilepsy meet that definition 2. This is despite the fact that there are 25 registered AED with a particular explosion of new drugs over the past 3 decades. That increased number of drugs surprisingly has not led to a significant reduction in the proportion of people who have intractable epilepsy. Thus, there was great hope in the epilepsy community (mainly patients and their families) that medicinal cannabis would bridge this gap. Cannabis had been used for millennia (especially in Asia) to treat a great variety of ailments including epilepsy. In the 19th century, its use became more mainstream in the western world with several neurologists documenting its efficacy and safety in small case series 3. Used alone or in combination with other treatments such as bromide, cannabinoids were the mainstay of epilepsy treatment until the development of phenobarbital (1912) and phenytoin (1937), which were proven to be efficacious. So why the recent resurgence of interest? A combination of the power of the Internet, vested interests such as agri‐business and marijuana legalization groups and growing public distrust of institutions and science 4. One just has to search the internet for ‘epilepsy and cannabis’ and often the same individual cases are recycled as examples of the next miracle cannabis cure of epilepsy. This Internet‐magnified confirmation bias of anecdotal reports has polarized views, bred distrust of doctors (and their requirement for evidence‐based medicine) and provided considerable hope but minimal help to those suffering with epilepsy and their carers. This review will focus mainly on cannabidiol (CBD), the most researched compound of the Cannabis sativa derivatives.

Robert J. Gumnit, MD (1931–2017)

When he first proposed to colleagues to use the phrase “Our Goal: No Seizures, No Side Effects,” the initial response was reluctance. Now the phrase is accepted orthodoxy in the epilepsy community and lives on despite the passing of its author, Robert J. Gumnit, who died on October 15, 2017, at age 86. When we consider the great names in epilepsy care in the United States, we think of Lennox, Merritt, Putnam, Penry, and Dreifuss. Although he did not seek recognition and was humble about his accomplishments, Bob Gumnit has earned a place on this list.

The Effect of Applying Self- and Family-Oriented Written Education on the Management of Medicamentose, Clinical Exposure, and Quality of Life of Patient with Epilepsy

Epilepsy is a brain disorder characterized by a tendency to induce a continuous epileptic recurrence and neurobiological, cognitive, psychological, as well as social consequences. Epilepsy seizures are a series of signs and/or symptoms caused by abnormal neuronal activities in the brain. The purpose of this study was to prove the benefits of applying self- and family-oriented educational management to clinical outcomes, self-management, and impact of epilepsy on family, patient’s quality of life, family support, and the role of doctors and family of the epilepsy patient. This is an experimental research using two groups pre and posttest design. The subjects were 80 epilepsy patients ranging from 18 to 70 years of age. All subjects had never had any epilepsy surgery. The subjects were randomly assigned to treatment and control groups; 40 subjects in the treatment group received treatment and self- as well as family-oriented education while the other 40 subjects in the control group received treatment only. Family-oriented education was conducted using written materials on pathophysiology and epilepsy management, psychological effects of epilepsy, and information about the epilepsy community. All of the subjects answered the questionnaires prior to and 3 months after treatment. The questionnaires include information on seizure frequency and seizure-free status, medication adherence, self-management, epilepsy impact on patient and family, and quality of life. The results show that self- and family-oriented education can improve medication adherence, self-management, and family roles. Family-oriented education reduces the frequency of seizures as well as the impact of epilepsy on patients and families. It was concluded that self- and family-oriented education had a positive effect on medical management, clinical outcomes, self-management, and the quality of life of patients with epilepsy.

Initial Treatment for Nonsyndromic Early-Life Epilepsy: An Unexpected Consensus

ObjectiveThere are no evidence-based guidelines on the preferred approach to treating early-life epilepsy. We examined initial therapy selection in a contemporary US cohort of children with newly diagnosed, nonsyndromic, early-life epilepsy (onset before age three years). MethodsSeventeen pediatric epilepsy centers participated in a prospective cohort study of children with newly diagnosed epilepsy with onset under 36 months of age. Details regarding demographics, seizure types, and initial medication selections were obtained from medical records. ResultsAbout half of the 495 enrolled children with new-onset, nonsyndromic epilepsy were less than 12 months old at the time of diagnosis (n = 263, 53%) and about half (n = 260, 52%) had epilepsy with focal features. Of 464 who were treated with monotherapy, 95% received one of five drugs: levetiracetam (n = 291, 63%), oxcarbazepine (n = 67, 14%), phenobarbital (n = 57, 12%), topiramate (n = 16, 3.4%), and zonisamide (n = 13, 2.8%). Phenobarbital was prescribed first for 50 of 163 (31%) infants less than six months old versus seven of 300 (2.3%) of children six months or older (P < 0.0001). Although the first treatment varied across study centers (P < 0.0001), levetiracetam was the most commonly prescribed medication regardless of epilepsy presentation (focal, generalized, mixed/uncertain). Between the first and second treatment choices, 367 (74%) of children received levetiracetam within the first year after diagnosis. ConclusionsWithout any specific effort, the pediatric epilepsy community has developed an unexpectedly consistent approach to initial treatment selection for early-life epilepsy. This suggests that a standard practice is emerging and could be utilized as a widely acceptable basis of comparison in future drug studies.

Does a bespoke intellectual disability (ID) epilepsy service reduce mortality? A 11 year study of sudden unexpected death in epilepsy (SUDEP) in Cornwall UK

AimEpilepsy is the second most common cause of premorbid mortality in the ID population. Rates of SUDEP are considered up to 9 times higher in the ID population. Cornwall UK (population 600.000 i.e. 1% of UK) runs a specialist ID epilepsy community service for adults with ID. It delivers reasonable adjustments and person centered care to this population. We measured how service outcomes on SUDEP compared to regional and national averages.MethodsData of all Cornwall epilepsy deaths 2004–2015 using the Cornwall Coroner's database and the Public Health Cornwall was reviewed systemically. We identified patients with and without ID.ResultsThere were 113 epilepsy deaths of which 57 were SUDEPs of which 3 were identified to have a clinical diagnosis of ID. In another 2 cases it was not evident if they had an ID or not. None of the 5 was known to the ID Epilepsy service. Mean and 95% confidence intervals were calculated using a binomial calculation, making no prior assumptions about the population distribution.ConclusionCornwall's specialist ID epilepsy service is a rarity in the UK. A recent study using the Leicestershire ID Register revealed 26 people with ID of the total deaths of 83 SUDEP. This contrasts greatly with Cornwall only 5.26% of SUDEP deaths had ID compared to 23.4% in Leicestershire and similarly when compared to neighboring Plymouth (population 300.000) which had 26% ID deaths in its SUDEPs between 2004–2012. It is possible that having an ID dedicated epilepsy service saves lives.

ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology.

The International League Against Epilepsy (ILAE) Classification of the Epilepsies has been updated to reflect our gain in understanding of the epilepsies and their underlying mechanisms following the major scientific advances that have taken place since the last ratified classification in 1989. As a critical tool for the practicing clinician, epilepsy classification must be relevant and dynamic to changes in thinking, yet robust and translatable to all areas of the globe. Its primary purpose is for diagnosis of patients, but it is also critical for epilepsy research, development of antiepileptic therapies, and communication around the world. The new classification originates from a draft document submitted for public comments in 2013, which was revised to incorporate extensive feedback from the international epilepsy community over several rounds of consultation. It presents three levels, starting with seizure type, where it assumes that the patient is having epileptic seizures as defined by the new 2017 ILAE Seizure Classification. After diagnosis of the seizure type, the next step is diagnosis of epilepsy type, including focal epilepsy, generalized epilepsy, combined generalized, and focal epilepsy, and also an unknown epilepsy group. The third level is that of epilepsy syndrome, where a specific syndromic diagnosis can be made. The new classification incorporates etiology along each stage, emphasizing the need to consider etiology at each step of diagnosis, as it often carries significant treatment implications. Etiology is broken into six subgroups, selected because of their potential therapeutic consequences. New terminology is introduced such as developmental and epileptic encephalopathy. The term benign is replaced by the terms self-limited and pharmacoresponsive, to be used where appropriate. It is hoped that this new framework will assist in improving epilepsy care and research in the 21st century.

Patient emotions and perceptions of antiepileptic drug changes and titration during treatment for epilepsy.

To investigate the impact of antiepileptic drug (AED) change and dose titration on the emotional well-being of patients with epilepsy. Members of an online epilepsy community were invited to voluntarily participate in an online survey. The cross-sectional anonymous survey consisted of 31 multiple choice questions balanced in terms of variety and positivity/negativity of emotions concerning participants' most recent AED change. To substantiate survey results, spontaneous comments from epilepsy-related online forums and social media websites that mentioned participants' experiences with AED medication changes (termed passive listening statements) were analyzed and categorized by theme. All 345 survey participants (270 [78.3%] female; 172 [49.9%] were 26-45years old) self-reported an epilepsy/seizure diagnosis and were currently taking seizure medication; 263 (76.2%) were taking ≥2 AEDs and 301 (87.2%) had ≥1 seizure in the previous 18months. All participants reported a medication change within the previous 12months (dose increased [153 participants (44.3%)], medication added [105 (30.4%)], dose decreased [49 (14.2%)], medication removed [38 (11.0%)]). Improving seizure control (247 [71.6%]) and adverse events (109 [31.6%]) were the most common reasons for medication change. Primary emotions most associated (≥10% of participants) with an AED regimen change were (before medication change; during/after medication change) hopefulness (50 [14.5%]; 43 [12.5%]), uncertainty (50 [14.5%]; 69 [20.0%]), and anxiety (35 [10.1%]; 45 [13.0%]), and were largely due to concerns whether the change would work (212/345 [61.4%]; 180/345 [52.2%]). In the text analysis segment aimed at validating the survey, 230 participants' passive listening statements about medication titration were analyzed; additional seizure activity during dose titration (93 [40.4%]), adverse events during titration (71 [30.9%]), higher medication dosages (33 [14.3%]), and drug costs (25 [10.9%]) were the most commonly noted concerns. Although the emotional well-being of patients with epilepsy is complex, our study results suggest that participants report their emotional well-being as negatively affected by changes in AED regimen, with most patients reporting uncertainty regarding the outcome of such a change. Future research is warranted to explore approaches to alleviate patient concerns associated with AED medication changes.

Self-Management in Epilepsy Care: Background, Barriers, and Solutions

Self-management programmes for epilepsy have been developed and studied for several decades but have proven difficult to implement and sustain in clinical practice settings. The most advanced work on the concept of self-management has occurred in academic centres with a focus on the theoretical underpinnings of patient and caregiver learning and social support, and the validation of outcome metrics. Although limited by trial design and real-world implementation, many programmes for epilepsy self-management have been successfully demonstrated to provide some benefits. Very few of these programmes however have been successfully sustained and scaled beyond the academic world. Known barriers include logistics and staff resource limitation, patient/caregiver travel, lack of an incentive structure, and limited healthcare promotion. New digital methods of presenting self-management educational content and services may address many of these barriers, even if the experience is less controlled. These online and mobile services permit ‘on-demand’ availability of content that can be tailored to individual needs. However, the epilepsy community must continue to actively promote and sponsor the concept of self-management as a whole.

Behavioral disorder in people with an intellectual disability and epilepsy: A report of the Intellectual Disability Task Force of the Neuropsychiatric Commission of ILAE.

SummaryThe management and needs of people with intellectual disability (ID) and epilepsy are well evidenced; less so, the comorbidity of behavioral disorder in this population. “Behavioral disorder” is defined as behaviors that are difficult or disruptive, including stereotypes, difficult or disruptive behavior, aggressive behavior toward other people, behaviors that lead to injury to self or others, and destruction of property. These have an important link to emotional disturbance. This report, produced by the Intellectual Disability Task Force of the Neuropsychiatric Commission of the ILAE, aims to provide a brief review of some key areas of concern regarding behavioral disorder among this population and proposes a range of research and clinical practice recommendations generated by task force members. The areas covered in this report were identified by experts in the field as being of specific relevance to the broad epilepsy community when considering behavioral disorder in persons with epilepsy and ID; they are not intended to be exhaustive. The practice recommendations are based on the authors’ review of the limited research in this field combined with their experience supporting this population. These points are not graded but can be seen as expert opinion guiding future research and clinical practice.

PatientsLikeMe® Online Epilepsy Community: Patient characteristics and predictors of poor health-related quality of life.

The online PatientsLikeMe® Epilepsy Community allows patients with epilepsy to record, monitor, and share their demographic, disease, and treatment characteristics, providing valuable insights into patient perceptions and understanding of epilepsy. The objective of this retrospective analysis was to characterize the profile of users and their disease and identify factors predictive of poor health-related quality of life (HRQoL), while assessing the platform's potential in providing patient-reported data for research purposes. Data recorded (January 2010-November 2011) by Epilepsy Community members, with an epilepsy diagnosis and who reported >1 seizure, included the following: sociodemographic and disease characteristics, treatments, symptoms, side effects perceived as medication-related, seizure occurrence, and standardized questionnaires (Quality of Life in Epilepsy Inventory [QOLIE-31/P], EuroQoL 5-Dimensions Scale, 3 Levels [EQ-5D-3L], and Hospital Anxiety and Depression Scale [HADS]). Univariate and multivariate logistic regressions were conducted to identify predictors of poor HRQoL. During the study period, the Epilepsy Community comprised 3073 patients, of whom 71.5% were female, had a mean age of 37.8years, and had a mean epilepsy duration of 17.7years. The most frequently reported moderate/severe symptoms (n=2135) included memory problems (60.2%), problems concentrating (53.8%), and fatigue (50.0%). Medication-related side effects (n=639) included somnolence (23.2%), fatigue (17.2%), and memory impairment (13.8%). The QOLIE-31/P scores (n=1121) were significantly worse in patients who experienced a recent seizure. For QOLIE-31/P, highly predictive factors for poor HRQoL included the following: mild/moderate problems concentrating, depression, memory problems, treatment side effects, occurrence of tonic-clonic seizures, and epilepsy duration ≤1year. For EQ-5D-3L, highly predictive factors for poor HRQoL included the following: pain, depression, and comorbidities. Patients on newer AEDs were less likely to report poor HRQoL (QOLIE-31/P). These findings move further towards supporting the feasibility and usefulness of collecting real-world, anonymized data recorded by patients online. The data provide insights into factors impacting HRQoL, suggesting that a holistic treatment approach beyond seizure control should be considered in epilepsy.