Epilepsy Experts Research Articles

Brain tumors and fitness to drive: A review and multi-disciplinary approach

Abstract Background Patients with brain tumors and their families often inquire about driving safety. Currently, there is no consensus regarding fitness-to-drive (FTD) for patients with central nervous system tumors. Our paper aims to provide a multi-disciplinary perspective to address this issue. Methods We performed a literature review for brain tumors and driving. Additionally, we solicited input from experts in tumor-related epilepsy, ophthalmology, neuropsychology, occupational therapy, and driving simulators. Results We qualitatively analyzed 14 published articles. FTD determination varies internationally and regionally in most developed nations. Significant motor weakness and major cognitive impairment clearly prevent patients from driving. There are specialized tests for motor, vision, and cognitive correlates important to driving, but driving simulators and on-the-road tests provide the most comprehensive assessments. FTD for patients with seizures is dependent on region-specific laws that take into account the duration of seizure-free intervals and history of motor vehicular crashes. Conclusions We recommend a symptom-based approach that highlights the importance of interdisciplinary assessment to ensure that brain tumor patients have the minimum operational skills required to drive. It is crucial to document seizure control, visual acuity impairment, and visual field deficits because these factors usually become the default basis in practice to determine if driving privileges can be maintained. Appropriately, timed assessment of cognitive function may provide pertinent information to determine FTD. Formalized testing with practical driving evaluation may eventually be necessary in patients who have hemiparesis, hemiplegia, hemineglect, homonymous visual field loss, or any form of cognitive dysfunction to determine FTD.

Expert opinion on use of vagus nerve stimulation therapy in the management of pediatric epilepsy: A Delphi consensus study

PurposeTo provide consensus-based recommendations for use of vagus nerve stimulation (VNS) therapy in the management of pediatric epilepsy. MethodsDelphi methodology with two rounds of online survey was used to build consensus. A steering committee developed 43 statements related to pediatric epilepsy and the use of VNS therapy, which were evaluated by a panel of 12 neurologists/neurosurgeons with expertise in pediatric epilepsy, who graded their agreement with each statement on a scale of 1 (“I do not agree at all”) to 5 (“I strongly agree”). For each statement, consensus was established if ≥70% of the agreement scores were 4 or 5 and <30% were 1 or 2 in the final survey. ResultsTwenty-four statements regarding the need for seizure reduction in pediatric epilepsy, the recommended treatment algorithm, the benefits and safety of VNS therapy, management of side effects of VNS therapy, patient selection for VNS therapy, and the use, dosing, and titration of VNS therapy achieved consensus. VNS and other neuromodulation therapies should be considered for pediatric patients with drug-resistant epilepsy who are not candidates for resective surgery, or who do not remain seizure free after resective surgery. When VNS therapy is initiated, the target dose range should be achieved via the fastest and safest titration schedule for each patient. Scheduled programming can be helpful in dose titration. ConclusionThe expert consensus statements represent the panelists’ collective opinion on the best practice use of VNS therapy to optimize outcomes in the management of pediatric epilepsy.

An advocacy based cross sectional study of healthcare professionals of factors impacting on medication adherence across nine Sub-Saharan African countries

BackgroundAdherence to anti-seizure medication (ASM) by people diagnosed with epilepsy in sub-Saharan Africa remains low. The factors for low adherence are not well understood. To improve adherence, it is important to understand the perceptions and views of healthcare professionals delivering epilepsy care to this population. The aim was to investigate the factors influencing ASM adherence. MethodsThis study uses a brief online questionnaire which asked healthcare professionals (both from nursing and medical backgrounds) who work in sub-Saharan African countries to rate a set of pre-established options designed with the feedback of a local focus group of epilepsy experts from countries targeted. The questionnaire consisted of six questions and was a mix of multiple choice and Likert scale questions. ResultsThere were 217 healthcare professionals who replied to the questionnaire. The most important factors believed to be influencing adherence from a healthcare professional perspective are; lack of availability of medication for epilepsy (71 %), affordability of medication (60 %), the patient, family, carer lacking in understanding of medication (43 %), cultural misconceptions about epilepsy (40 %) and side effects of the medication (32 %). The survey was answered by many different healthcare professionals; 65 participants were doctors and 152 were other healthcare professionals such as nurses (59 %) pharmacists (10 %) and when comparing them, the three most important categories were consistent across groups. ConclusionHealthcare workers in Sub-Saharan Africa identify that the primary factors impacting adherence to ASMs, in their view, is affordability and availability of ASMs.Addressing this issue may reduce the treatment gap.

Consensus panel recommendations for the optimization of EPIDIOLEX® treatment for seizures associated with Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex.

Following the approval of Epidiolex® (cannabidiol; CBD) for the treatment of seizures associated with Lennox-Gastaut syndrome (LGS), Dravet syndrome (DS), and tuberous sclerosis complex (TSC), healthcare professionals (HCPs) have had substantial experience in treating patients with Epidiolex. However, confusion still remains among HCPs, caregivers, and patients regarding dosing, drug interactions, safety monitoring, and differentiation between Epidiolex and nonapproved CBD products. To establish consensus recommendations for Epidiolex treatment optimization in LGS, DS, and TSC, a panel of seven HCPs with expertise in epilepsy was convened. Panelists participated in a premeeting survey based on a literature review of Epidiolex for the treatment of LGS, DS, and TSC, and survey responses were compiled for discussion. A modified Delphi method was used to assess agreement among panelists regarding recommendation statements following two rounds of discussion. Panelists identified two broad themes - overcoming barriers to initiation and optimization of treatment for seizures associated with LGS, DS, and TSC - for consensus guidelines. Accurate identification of patients with these rare epilepsies is critical for optimization of Epidiolex treatment. Providers should differentiate Epidiolex from nonapproved CBD products and set expectations for the therapeutic effect and safety/tolerability of Epidiolex. Initial target dose and titration rate should be individualized by baseline variables, prior response to antiseizure medications, and therapeutic goals. Awareness of strategies to manage adverse events and concomitant medications, including drug-drug interactions, is critical. Tracking response to the maximum tolerated dose is an important measure of effectiveness. These consensus recommendations provide real-world experience from neurology HCPs with experience in prescribing Epidiolex and can inform optimal use of Epidiolex for the treatment of seizures associated with LGS, DS, and TSC. PLAIN LANGUAGE SUMMARY: Epidiolex® (cannabidiol) is approved for treating seizures in Lennox-Gastaut syndrome, Dravet syndrome, and tuberous sclerosis complex. Although healthcare professionals have experience in treating patients with Epidiolex, there is a need for better understanding of dosing, drug interactions, and safety of this drug. Therefore, a group of epilepsy experts developed guidelines for best practices in Epidiolex treatment. Two main areas were identified: overcoming barriers to starting Epidiolex and considerations related to Epidiolex dosing. Within these areas, topics, including correct disease identification, managing adverse events, and determining individualized dose, were discussed. These guidelines provide real-world experience to inform optimal Epidiolex use.

Consensus Guideline on the Management of Epilepsy in Egypt: A National Delphi Consensus Study.

In epilepsy, early diagnosis, accurate determination of epilepsy type, proper selection of antiseizure medication, and monitoring are all essential. However, despite recent therapeutic advances and conceptual reconsiderations in the classification and management of epilepsy, serious gaps are still encountered in day-to-day practice in Egypt as well as several other resource-limited countries. Premature mortality, poor quality of life, socio-economic burden, cognitive problems, poor treatment outcomes, and comorbidities are major challenges that require urgent actions to be implemented at all levels. In recognition of this, a group of Egyptian epilepsy experts met through a series of consecutive meetings to specify the main concepts concerning the diagnosis and management of epilepsy, with the ultimate goal of establishing a nationwide Egyptian consensus. The consensus was developed through a modified Delphi methodology. A thorough review of the most recent relevant literature and international guidelines was performed to evaluate their applicability to the Egyptian situation. Afterward, several remote and live rounds were scheduled to reach a final agreement for all listed statements. Of 278 statements reviewed in the first round, 256 achieved ≥80% agreement. Live discussion and refinement of the 22 statements that did not reach consensus during the first round took place, followed by final live voting then consensus was achieved for all remaining statements. With the implementation of these unified recommendations, we believe this will bring about substantial improvements in both the quality of care and treatment outcomes for persons with epilepsy in Egypt. This work represents the efforts of a group of medical experts to reach an agreement on the best medical practice related to people with epilepsy based on previously published recommendations while taking into consideration applicable options in resource-limited countries. The publication of this document is expected to minimize many malpractice issues and pave the way for better healthcare services on both individual and governmental levels.

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Infants, Children, and Adolescents with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. The International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy, and their representatives to develop minimum sets of standardized outcomes and outcome measurement methods for clinical practice. Using modified Delphi consensus methods with consecutive rounds of online voting over 12 months, a core set of outcomes and corresponding measurement tool packages to capture the outcomes were identified for infants, children, and adolescents with epilepsy. Consensus methods identified 20 core outcomes. In addition to the outcomes identified for the ICHOM Epilepsy adult standard set, behavioral, motor, and cognitive/language development outcomes were voted as essential for all infants and children with epilepsy. The proposed set of outcomes and measurement methods will facilitate the implementation of the use of patient-centered outcomes in daily practice.

Development of an International Standard Set of Outcomes and Measurement Methods for Routine Practice for Adults with Epilepsy: The International Consortium for Health Outcomes Measurement Consensus Recommendations.

At present, there is no internationally accepted set of core outcomes or measurement methods for epilepsy clinical practice. Therefore, the International Consortium for Health Outcomes Measurement (ICHOM) convened an international working group of experts in epilepsy, people with epilepsy and their representatives to develop minimum sets of standardized outcomes and outcomes measurement methods for clinical practice that support patient-clinician decision-making and quality improvement. Consensus methods identified 20 core outcomes. Measurement tools were recommended based on their evidence of strong clinical measurement properties, feasibility, and cross-cultural applicability. The essential outcomes included many non-seizure outcomes: anxiety, depression, suicidality, memory and attention, sleep quality, functional status, and the social impact of epilepsy. The proposed set will facilitate the implementation of the use of patient-centered outcomes in daily practice, ensuring holistic care. They also encourage harmonization of outcome measurement, and if widely implemented should reduce the heterogeneity of outcome measurement, accelerate comparative research, and facilitate quality improvement efforts.

Neurological Practice in the Time of War: Perspectives and Experiences from Ukraine.

The full-scale Russian invasion of Ukraine has significantly impacted the country's healthcare system. Insufficient infrastructure, destruction of medical facilities, and barriers to prevention and treatment efforts hinder the provision of timely, high-quality care to our patients. We aim to describe the impact of the war on neurological care across Ukraine. In this article, leading national experts in stroke, epilepsy, multiple sclerosis, and movement disorders describe their personal experience and efforts in organizing and providing care since the war started in February 2022. A neurologist who cared for patients in Mariupol recounts the first weeks of the war when the city was under constant attacks. An international stroke expert describes the role of Task Force for Ukraine, a European Stroke Organization initiative to support the Ukrainian stroke community. We discuss a series of critical challenges facing Ukraine's neurologists, patients, and healthcare delivery system, including shortages of personnel and medical supplies, disrupted logistics, and lack of funding. In addition, we highlight various interventions and strategies aimed at counteracting these challenges, including international support, collaborations within Ukraine, and initiatives enhancing the resilience of the Ukrainian neurology community. As the war is ongoing, this article emphasizes the pressing need for continuous support and investment in the Ukrainian healthcare system to preserve guaranteed access to high-quality healthcare for the Ukrainian people during the war and in its aftermath. Insights from the essays can inform the development and implementation of effective strategies and interventions tailored to such extraordinary circumstances.

Delphi consensus on the transition from paediatric to adult epilepsy care

IntroductionThe transition from paediatric to adult neurology consultations in patients with epilepsy must be understood as a process in which the patient acquires independence in the management of their disease and faces new issues related to adulthood. The aim of this study is to gather the opinion of experts in epilepsy on this transition in order to issue recommendations. MethodsUsing a Delphi consensus process, 54 paediatric and adult neurologists with expertise in epilepsy expressed their degree of agreement on 38 statements on about the transition from paediatric to adult consultations, grouped into the following sections: (1) preparation and moments prior to transition; (2) transition process; and (3) moments after the transition and follow-up. ResultsAfter 2 rounds, consensus was reached for 33 statements (86.8%). For the remaining 5 statements (13.2%), there was neither agreement nor disagreement. Among the subjects for which consensus was strongest was the involvement of the patient and family, who must be provided sufficient information to resolve their doubts and concerns. Before referral, the clinical report must be reviewed to ensure that it contains all relevant information on the disease. During the first follow-up visits after the transition, the patient's knowledge should be brought up to date in order to promote their autonomy. ConclusionThe clinical report, early preparation, and complete case review are considered fundamental in the process of transition from paediatric to adult neurology care.

A roadmap for SHANK3-related Epilepsy Research: recommendations from the 2023 strategic planning workshop.

On September 27, 2023, the CureSHANK nonprofit foundation sponsored a conference in Boston, Massachusetts, to identify gaps in knowledge surrounding SHANK3-related epilepsy with the goal of determining future research priorities and recommendations. In addition to patient families and members of the CureSHANK community, participants in the conference included a broad cross-section of preclinical and clinical researchers and clinicians with expertise in SHANK3-related epilepsy as well as representatives from the pharmaceutical industry. Here we summarize the outcomes from comprehensive premeeting deliberations and the final conference recommendations, including (1) gaps in knowledge related to clinical science, (2) gaps in knowledge related to preclinical science, and (3) research priorities moving forward.

Scoping review and expert-based consensus recommendations for assessment and management of psychogenic non-epileptic (functional) seizures (PNES) in children: A report from the Pediatric Psychiatric Issues Task Force of the International League Against Epilepsy.

Limited guidance exists regarding the assessment and management of psychogenic non-epileptic seizures (PNES) in children. Our aim was to develop consensus-based recommendations to fill this gap. The members of the International League Against Epilepsy (ILAE) Task Force on Pediatric Psychiatric Issues conducted a scoping review adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-SR) standards. This was supplemented with a Delphi process sent to pediatric PNES experts. Consensus was defined as ≥80% agreement. The systematic search identified 77 studies, the majority (55%) of which were retrospective (only one randomized clinical trial). The primary means of PNES identification was video electroencephalography (vEEG) in 84% of studies. Better outcome was associated with access to counseling/psychological intervention. Children with PNES have more frequent psychiatric disorders than controls. The Delphi resulted in 22 recommendations: Assessment-There was consensus on the importance of (1) taking a comprehensive developmental history; (2) obtaining a description of the events; (3) asking about potential stressors; (4) the need to use vEEG if available parent, self, and school reports and video recordings can contribute to a "probable" diagnosis; and (5) that invasive provocation techniques or deceit should not be employed. Management-There was consensus about the (1) need for a professional with expertise in epilepsy to remain involved for a period after PNES diagnosis; (2) provision of appropriate educational materials to the child and caregivers; and (3) that the decision on treatment modality for PNES in children should consider the child's age, cognitive ability, and family factors. Comorbidities-There was consensus that all children with PNES should be screened for mental health and neurodevelopmental difficulties. Recommendations to facilitate the assessment and management of PNES in children were developed. Future directions to fill knowledge gaps were proposed.

Resolution on the meeting of doctors of the Council of Expert Neurologists-Epileptologists from the Volga Region and Moscow for evaluating effectiveness and tolerability of therapy in patients with epilepsy

On November 15, 2022, a meeting of the Council of Experts from the working group of neurologists-epileptologists from the Volga Region and epilepsy experts from Moscow was held, dedicated to assessing effectiveness of antiepileptic therapy in the Volga Region, taking into account age, clinical, hormonal, social characteristics, as well as reproductive plans of female patients. Priority provisions have been developed aimed at selecting starting therapy in different age groups, as well as determining management tactics and a need for correction of antiepileptic therapy in women with childbearing potential. The article presents the Resolution of the experts meeting, adopted after discussion.

Evaluation of the knowledge, awareness, and attitudes toward epilepsy among nurses

BackgroundThe standard of care provided to patients with chronic epilepsy might be affected by clinical nurses’ understanding, awareness, and attitudes toward the condition. The objective of this study was to assess the knowledge, awareness, and attitudes toward chronic epilepsy among clinical nurses in the Second Affiliated Hospital of Zhejiang University School of Medicine, China. MethodsTwo hundred and thirty-eight nurses from the neurosurgery, neurology, epilepsy center, other internal medicine and other surgery department working at our hospital participated in this descriptive and cross-sectional study in 2022. The data were collected through an electronic questionnaire, which comprised four domains including demographic and clinical epilepsy-related questions, awareness of epilepsy section, 18 items for knowledge and a 15-item scale for attitudes. Mann–Whitney U tests, Kruskal–Wallis H tests, post hoc analysis, Pearson correlation analysis, and descriptive statistics were used to analyze the non-normal distribution of the dataset. ResultsThe clinical nurses’ average score on the awareness of epilepsy section was 14.93 ± 2.69 (maximum score: 20), the knowledge of epilepsy section scored 15.41 ± 2.30 (maximum score: 18), and the epilepsy attitude section scored 30.65 ± 7.40. The knowledge and awareness accuracy of the responses to the epilepsy-related questions were positively and significantly correlated (r = 0.251, p < 0.001). The multiple linear regression model found that the department (p < 0.001) and rank (p = 0.015) of nurses were independently associated with awareness toward epilepsy. Meanwhile, there was a statistically significant difference between the departments of nurses and accuracy on the Epilepsy Knowledge Scale (H = 18.340, p < 0.001). In addition, 92.77% of nurses agreed that people with chronic epilepsy have the same rights as all people. Unfortunately, over 30% of nurses maintained an uncertain attitude toward the employment, marriage, and emotion related to epilepsy. ConclusionOur findings revealed that nurses had a general awareness and understanding of epilepsy, attitudes toward epilepsy. Specifically, nurses working in the Neurology Department and the Epilepsy Center were predisposed to have a considerably better level of awareness and knowledge of epilepsy. Additionally, as their understanding of epilepsy grew, so did their sensitivity to those who suffer from the condition. The study also recommends that epilepsy experts deliver additional lectures and training sessions to enhance nurses’ knowledge of first-aid for seizures.

Stiripentol add-on therapy for drug-resistant focal epilepsy.

This is an updated version of the Cochrane Review first published in 2014 and last updated in 2020. For nearly 30% of people with epilepsy, current treatments do not control seizures. Stiripentol is an antiepileptic drug (AED) that was developed in France and was approved by the European Medicines Agency (EMA) in 2007 as an adjunctive therapy with valproate and clobazam for the treatment of Dravet syndrome. To evaluate the efficacy and tolerability of stiripentol as add-on treatment for people with drug-resistant focal epilepsy who are taking AEDs. For the latest update, we searched the Cochrane Register of Studies (CRS Web) and MEDLINE on 28 March 2022. We contacted the manufacturer of stiripentol and epilepsy experts to identify published, unpublished and ongoing trials. Randomised controlled trials of add-on stiripentol in people with drug-resistant focal epilepsy. Review authors independently selected trials for inclusion and extracted data. We investigated outcomes including 50% or greater reduction in seizure frequency, seizure freedom, adverse effects, treatment withdrawal and changes in quality of life. On the basis of our selection criteria, we included no new studies in the present review update. We included only one study from the original review (32 children with focal epilepsy). This study adopted a responder-enriched design and found no clear evidence of a reduction of 50% or more in seizure frequency (risk ratio (RR) 1.51, 95% confidence interval (CI) 0.81 to 2.82; low-certainty evidence) and no clear evidence of seizure freedom (RR 1.18, 95% CI 0.31 to 4.43; low-certainty evidence) when comparing add-on stiripentol with placebo. Stiripentol led to a greater risk of adverse effects considered as a whole (RR 2.65, 95% CI 1.08 to 6.47; low-certainty evidence). When we considered specific adverse effects, CIs were very wide and showed the possibility of substantial increases and small reductions in risks of neurological adverse effects (RR 2.65, 95% CI 0.88 to 8.01; low-certainty evidence). Researchers noted no clear reduction in the risk of study withdrawal (RR 0.66, 95% CI 0.30 to 1.47; low-certainty evidence), which was high in both groups (53.3% in placebo group and 35.3% in stiripentol group; low-certainty evidence). The external validity of this study was limited because only responders to stiripentol (i.e. participants experiencing a decrease in seizure frequency of 50% or greater during an open prerandomisation phase compared with baseline) were included in the randomised, add-on, placebo-controlled, double-blind phase. Furthermore, carry-over and withdrawal effects probably influenced outcomes related to seizure frequency. Very limited information derived from the only included study shows that adverse effects considered as a whole may occur more often with add-on stiripentol than with add-on placebo. We have found no new studies since the last version of this review was published. Hence, we have made no changes to the conclusions as presented in previous versions. We can draw no conclusions to support the use of stiripentol as add-on treatment for drug-resistant focal epilepsy. Additional large, randomised, well-conducted trials are needed.

Optimal Use of Perampanel in Elderly Asian Patients with Epilepsy: Expert Opinion.

Managing epilepsy in the elderly remains complicated largely due to factors related to aging. In this population, management practices are increasingly shifting towards the use of newer-generation anti-seizure medications (ASMs) as they are generally associated with better tolerability and safety profiles than older ones. Perampanel is a new ASM with broad-spectrum efficacy and a favorable safety profile. However, because of the lack of information and experience in its use, the prescription of perampanel has not been optimized in the elderly in the real-world setting in Asia. A group of epilepsy experts across the region convened at a series of virtual meetings to share their experience and discuss recommendations on perampanel use in elderly patients, including dose optimization, considerations with treatment initiation, and strategies to manage adverse events and maximize tolerability. This article summarizes key clinical and real-world evidence for perampanel in the elderly and consolidates the experts’ opinions on optimizing perampanel use in elderly Asian patients with epilepsy, providing practical guidance for clinicians to address challenges related to treatment initiation and tolerance.

P.009 Canadian Survey of the neurological care provided to women living with epilepsy: preliminary results

Background: In Canada, approximately 300,000 women with epilepsy (WWE) are of childbearing potential. Given the unique aspects of providing care for WWE, our objective was to gather demographic and practice characteristics of health care professionals providing care for WWE to identify potential gaps. Methods: We developed a questionnaire to understand the demographic and practice characteristics of professionals providing care for WWE. We invited all French and English practitioners (physicians, physician assistants and nurse practitioners), recruited through the Canadian League Against Epilepsy (CLAE), Canadian Neurological Sciences Federation (CNSF) and Canadian Epilepsy nursing Group (CENG), to complete our online questionnaire. Results: Preliminary data show 43% were between 32-40 years of age and 76% were medical doctors. Sixty-three percent had been in practice for less than 20 years; 81% considered themselves epilepsy specialists and 66% devoted their practice entirely to epilepsy patients and 78% practiced exclusively in academic centers. Conclusions: Our data shows providers involved in the care of women with epilepsy in Canada are predominantly academic experts in epilepsy. Potential gaps in care include mid-late career physicians, non-specialized health care practitioners, and community-based practices, as less likely to provide care for WWE. This snapshot may provide future insights to the unmet needs of WWE Canada.

Optimal Use of Perampanel in Asian Patients with Epilepsy: Expert Opinion.

Perampanel is a once-daily, first-in-class AMPA receptor antagonist approved for the treatment of epilepsy and exhibits broad-spectrum efficacy in a range of seizure types when used as both monotherapy and adjunctive therapy. Clinical studies and real-world evidence have demonstrated the advantages of initiating perampanel at low doses and utilizing a slow titration strategy. Initiating perampanel at an early stage has also been shown to be associated with better patient outcomes. However, the optimal use and place of perampanel in clinical practice has not yet been clearly defined for the Asian patient population. Use of perampanel in clinical practice varies markedly across the Asia region because of variation in knowledge, attitudes, and practice. There is currently no specific guidance on best practices for prescribing perampanel in Asian patients or how to optimize treatment strategies to maximize adherence. A group of epilepsy experts attended a virtual meeting in September 2020 to discuss their experience with using perampanel in the Asian practice setting, including their views regarding appropriate patient populations, optimal starting and maintenance doses, optimal titration regimens, key barriers to adherence, and prevention and management of adverse events. This article summarizes key clinical and real-world evidence for perampanel and consolidates the experts’ opinions on optimization of perampanel prescribing and adherence in real-world practice, providing practical strategies for clinicians to implement to improve outcomes for people with epilepsy in Asia.

Survey on Antiepileptic Drug Therapy in Patients with Drug Resistant Epilepsy.

Background and PurposeIndividualized anti-epileptic drug (AED) selection in patient with epilepsy is crucial. However, there is no unified opinion in treating patients with drug resistant epilepsy (DRE). This survey aimed to make a consolidate consensus with epileptologists’ perspectives of the treatment for Korean DRE patients by survey responses.MethodsThe survey was conducted with Korean epilepsy experts who have experience prescribing AEDs via e-mail. Survey questionnaires consisted of six items regarding prescription patterns and practical questions in treating patients with DRE in Korea. The research period was from February 2021 to March 2021.ResultsThe survey response rate was 83.3% (90/108). Most (77.8%) of the responders are neurologists. The proportion of patients whose seizures were not controlled by the second AED was 26.9%. The proportion of patients who had taken five or more AEDs is 13.9%, and those who are currently taking five or more AEDs are 7.3%, of which 54.5% and 37.9% reported positive effects on additional AED, respectively. The majority (91.1%) of respondents answered that the mechanism of action was the top priority factor when adding AED. Regarding data priority, responders considered that expert opinion should have the top priority, followed by clinical experiences, reimbursement guidelines and clinical evidence. Responders gave 64.9 points (range from 0 to 100) about overall satisfaction on reimbursement system of Health Insurance Review and Assessment Service for AED.ConclusionsThis study on AED therapy for DRE patients is the first nationwide trial in Korean epilepsy experts. In five drug failure, the top priorities on AED selection are mechanism of action and expert opinion. These findings might help to achieve consensus and recognize the insight on optimal therapy of AED in DRE.

Informed DEcision for cerebrospinal fluid analysis after epiLeptic seizures- the IDEAL-score: A development and validation study

BackgroundThis observational study was done to develop a score based on clinical predictors that enables a guided decision for the necessity of cerebrospinal fluid (CSF) analysis after first unprovoked epileptic seizures and to validate this score in a retrospective patient cohort. MethodsClinical predictors were identified by two panels of epilepsy experts and selected according to content validity ratios. Based on these predictors a score was created and applied to a cohort of patients with first epileptic seizures. ResultsThe “IDEAL score” consists of 9 items (fever, prolonged disturbance of consciousness, headache, imaging results, cognitive dysfunction, status epilepticus, malignancy, autoimmune encephalitis symptoms) that are collected at two different time points (< 3 h [A-score]; > 3 h [B-score] after hospital admittance). A CSF analysis is recommended, if at least one clinical finding is present, either one of the items evaluated during the acute phase (A-score) or later in the diagnostic process (B-score). In 41 patients (13%) CSF analysis provided essential clues to the cause of the seizure. The combined IDEAL score reached a sensitivity of 98%, a specificity of 53%, a positive predictive value of 24% and a negative predictive value of 99% in this patient cohort. ConclusionsA CSF analysis after first epileptic seizures provided decisive etiological findings in only 13% of all investigated patients. The IDEAL score offers clinicians a simple and easy-to-implement algorithm to assess the necessity of a CSF analysis, and to prevent unnecessary diagnostic procedures.

Epileptologists infrequently discuss the risk of intubation with patients with epilepsy in the United States.

The aim of this study was to assess how frequently epileptologists discuss advance directives regarding intubation and mechanical ventilation with patients with epilepsy. A secondary aim was to understand the attitudes of neurologists toward discussion and implementation of such advance directives in epilepsy care. An online study survey was developed and distributed by email invitation to 210 neurologists at academic epilepsy and neurophysiology programs in the United States in December 2018. Seventy-seven neurologists, 95% with a clinical practice focus of epilepsy in adults, participated in the study (37% response rate). Three percent reported discussion of risk of intubation with "every" or a "majority" of patients newly diagnosed with epilepsy. Seventy-seven percent indicated a neurologist was the "most appropriate provider to have discussions concerning mechanical ventilation with patients with epilepsy." Twenty-five percent "strongly agreed" that "every patient with epilepsy should have an advance directive specifying their preferences concerning mechanical ventilation in the setting of treatment for seizures." A majority favored overriding a hypothetical patient's advance directive specifying no intubation in the context of airway compromise as a consequence of status epilepticus and its treatment. Epileptologists infrequently discuss the risk of intubation and mechanical ventilation with patients with epilepsy. Many felt that such discussions are unnecessary with most patients, but also best led by a neurologist. Neurologists with expertise in epilepsy may favor overriding advance directives in the setting of status epilepticus. Further data is needed surrounding discussion and implementation of advance care planning in patients with epilepsy.