Epilepsy Guidelines Research Articles

Annotation of epilepsy clinic letters for natural language processing

BackgroundNatural language processing (NLP) is increasingly being used to extract structured information from unstructured text to assist clinical decision-making and aid healthcare research. The availability of expert-annotated documents for the development and validation of NLP applications is limited. We created synthetic clinical documents to address this, and to validate the Extraction of Epilepsy Clinical Text version 2 (ExECTv2) NLP pipeline.MethodsWe created 200 synthetic clinic letters based on hospital outpatient consultations with epilepsy specialists. The letters were double annotated by trained clinicians and researchers according to agreed guidelines. We used the annotation tool, Markup, with an epilepsy concept list based on the Unified Medical Language System ontology. All annotations were reviewed, and a gold standard set of annotations was agreed and used to validate the performance of ExECTv2.ResultsThe overall inter-annotator agreement (IAA) between the two sets of annotations produced a per item F1 score of 0.73. Validating ExECTv2 using the gold standard gave an overall F1 score of 0.87 per item, and 0.90 per letter.ConclusionThe synthetic letters, annotations, and annotation guidelines have been made freely available. To our knowledge, this is the first publicly available set of annotated epilepsy clinic letters and guidelines that can be used for NLP researchers with minimum epilepsy knowledge. The IAA results show that clinical text annotation tasks are difficult and require a gold standard to be arranged by researcher consensus. The results for ExECTv2, our automated epilepsy NLP pipeline, extracted detailed epilepsy information from unstructured epilepsy letters with more accuracy than human annotators, further confirming the utility of NLP for clinical and research applications.

The clinical, sociodemographic, and pharmacotherapeutic characteristics influencing quality of life in patients with epilepsy

Background: It is becoming widely understood that evaluating a patient’s quality of life (QOL) is crucial to managing their epilepsy. The study aimed to explore the impact of sociodemographic, clinical, and pharmacotherapy factors on QOL in patients with epilepsy. Methods: This was a cross-sectional study conducted over 2 years at the outpatient and inpatient Department of Medicine (Neurology Division) of SMHS Hospital, affiliated with Government Medical College, Srinagar. The patients with epilepsy with a definite diagnosis of epilepsy as per the International League Against Epilepsy (ILAE) guidelines were included. Results: Patients on polytherapy had significantly lower scores for overall QOL, energy/fatigue, medication effects, social functioning, and overall score. Patients on monotherapy scored significantly lower for the said domains, including the seizure worry domain, compared to those patients with epilepsy who were antiepileptic drugs (AEDs) naive. Conclusion: Individuals who were receiving monotherapy had greater QOL scores than those who were receiving traditional AEDs and had focal epilepsy. Furthermore, in patient with epilepsy, all QOL domains were significantly predicted by increased seizure frequency and the presence of adverse drug reactions (ADRs).

Epidemiology, real-world treatment and mortality of patients with status epilepticus in Germany: insights from a large healthcare database.

Status epilepticus is a life-threatening emergency, and to date, few studies have reported on its long-term treatment and outcomes. This study aimed to estimate the incidence, the treatment and outcomes, the healthcare resource utilization and the costs of status epilepticus in Germany. Data from 2015 to 2019 were obtained from German claims (AOK PLUS). Patients with ≥1 status epilepticus event and no event in the preceding 12 months (baseline) were included. A subgroup of patients with an epilepsy diagnosis during baseline was also analysed. Of the 2782 status epilepticus patients (mean age = 64.3 years; 52.3% female), 1585 (57.0%) were previously diagnosed with epilepsy. The age- and sex-standardized incidence was 25.5 cases/100 000 persons in 2019. The mortality rate after 12 months was 39.8% overall (19.4% and 28.2% after 30 and 90 days, respectively) and 30.4% in the epilepsy patient subgroup. Factors associated with higher mortality were age, comorbidity status, presence of brain tumours and an acute stroke. An epilepsy-related hospitalization at onset of or 7 days prior to the status epilepticus event as well as prescription of antiseizure medication during baseline was associated with a better survival rate. Overall, 71.6% of patients (85.6% in the epilepsy subgroup) were prescribed with out-patient antiseizure medication and/or rescue medication within 12 months. All patients sustained on average 1.3 status epilepticus-related hospitalizations (20.5% had more than one) during a mean follow-up period of 545.2 days (median 514 days); total direct costs including in-patient and out-patient status epilepticus treatments were 10 826€ and 7701€ per patient-year overall and for the epilepsy patient subgroup, respectively. The majority of status epilepticus patients received an out-patient treatment in line with epilepsy guidelines, and patients previously diagnosed with epilepsy have a higher likelihood to receive it. The mortality in the affected patient population is high; risk factors were older age, higher comorbidity burden, the presence of brain tumours or an acute stroke.

Routine and sleep EEG: Minimum recording standards of the International Federation of Clinical Neurophysiology and the International League Against Epilepsy.

This article provides recommendations on the minimum standards for recording routine ("standard") and sleep electroencephalography (EEG). The joint working group of the International Federation of Clinical Neurophysiology (IFCN) and the International League Against Epilepsy (ILAE) developed the standards according to the methodology suggested for epilepsy-related clinical practice guidelines by the Epilepsy Guidelines Working Group. We reviewed the published evidence using the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) statement. The quality of evidence for sleep induction methods was assessed by the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) method. A tool for Quality Assessment of Diagnostic Studies (QUADAS-2) was used to assess the risk of bias in technical and methodological studies. Where high-quality published evidence was lacking, we used modified Delphi technique to reach expert consensus. The GRADE system was used to formulate the recommendations. The quality of evidence was low or moderate. We formulated 16 consensus-based recommendations for minimum standards for recording routine and sleep EEG. The recommendations comprise the following aspects: indications, technical standards, recording duration, sleep induction, and provocative methods.

Evaluating consciousness and awareness during focal seizures: responsiveness testing versus recall testing

The current International League Against Epilepsy (ILAE) guidelines classify focal seizures based on awareness, defined as successful postictal recall of ictal experiences, and exclude the use of responsiveness during seizures for classification. One reason for this exclusion is that responsiveness was thought to not be commonly tested during seizures. Our goal was to determine whether, in at least some settings, responsiveness testing during seizures is relatively common. We assessed how often responsiveness and recall were each evaluated in patients with focal epilepsy undergoing surface and intracranial EEG-video monitoring. We performed this evaluation by retrospectively reviewing video recordings from 121 seizures from 48 patients during their stay in the epilepsy monitoring unit between September 2012 and November 2019. We found that responsiveness during seizures was tested more frequently than recall of ictal events after seizures. Of 121 seizures in 48 patients, responsiveness was tested in 101 seizures, whereas recall was tested in only 38. Evaluating if consciousness is impaired during seizures is of critical importance for guiding recommendations for people with epilepsy, such as whether it is safe for them to drive or operate machinery. The ILAE classification guidelines are intended to be broadly useful, but our findings demonstrate that at least in one important clinical setting, responsiveness was used more commonly than recall to evaluate patients during focal seizures. Although our preliminary findings should be replicated in a larger sample and in other patient groups, they suggest that responsiveness testing during focal seizures might be relatively common in at least some clinical practice settings. With further study, this may lead to a re-evaluation of criteria for classifying focal seizures to include both responsiveness and recall of experiences during seizures, as both may provide important information to guide clinical care.

What is a clinical practice guideline? A roadmap to their development. Special report from the Guidelines Task Force of the International League Against Epilepsy.

Clinical practice guidelines (CPGs) are statements that provide evidence-based recommendations aimed at optimizing patient care. However, many other documents are often published as "guidelines" when they are not; these documents, although also important in clinical practice, are usually not systematically produced following rigorous processes linking the evidence to the recommendations. Specifically, the International League Against Epilepsy (ILAE) guideline development toolkit aims to ensure that high-quality CPGs are developed to fill knowledge gaps and optimize the management of epilepsy. In addition to adhering to key methodological processes, guideline developers need to consider that effective CPGs should lead to improvements in clinical processes of care and health care outcomes. This requires monitoring the effectiveness of epilepsy-related CPGs and interventions to remove the barriers to epilepsy CPG implementation. This article provides an overview of what distinguishes quality CPGs from other documents and discusses their benefits and limitations. We summarize the recently revised ILAE CPG development process and elaborate on the barriers and facilitators to guideline dissemination, implementation, and adaptation.

A Multicenter Study of Adherence to Best Practices and Application of Epilepsy Quality Metrics in a Pediatric Telemedicine Encounter.

Objective: To assess Epilepsy Quality Metrics (EQM) and guideline implementation in new pediatric patients seen in telemedicine. Methods: Multicenter, cross sectional, retrospective analysis. Results: Patients were similar across 3 centers for age, gender, and insurance type. Eighty-one percent presented for spells. One hundred sixty patients with epilepsy formed the EQM cohort. Results: Seizures described: 95%; frequency: 67%, last seizure documented: 81%, epilepsy syndrome documented: 67%; epilepsy diagnosis: 77%, medications reviewed: 56%, adverse events discussed: 73%. Quality of life discussed: 3%. Anticipatory guidance was described as follows: seizure safety, 57%; driving, 47%; SUDEP, 11%; vitamin D discussion, 19%; pregnancy and folic acid counseling, 4% and 10%. Epileptologists were 4 times as likely as generalists in discussing driving safety (odds ratio 3.93, 95% confidence interval 1.7-8.9; P = .001) for all ages. Significance: Performance on EQM and guideline implementation in pediatric epilepsy telemedicine encounters can be improved.

Minimum standards for inpatient long-term video-electroencephalographic monitoring: A clinical practice guideline of the International League Against Epilepsy and International Federation of Clinical Neurophysiology.

The objective of this clinical practice guideline is to provide recommendations on the indications and minimum standards for inpatient long-term video-electroencephalographic monitoring (LTVEM). The Working Group of the International League Against Epilepsy and the International Federation of Clinical Neurophysiology develop guidelines aligned with the Epilepsy Guidelines Task Force. We reviewed published evidence using the PRISMA (Preferred Reporting Items for Systematic Review and Meta-Analysis) statement. We found limited high-level evidence aimed at specific aspects of diagnosis for LTVEM performed to evaluate patients with seizures and nonepileptic events. For classification of evidence, we used the Clinical Practice Guideline Process Manual of the American Academy of Neurology. We formulated recommendations for the indications, technical requirements, and essential practice elements of LTVEM to derive minimum standards used in the evaluation of patients with suspected epilepsy using GRADE (Grading of Recommendations Assessment, Development, and Evaluation). Further research is needed to obtain evidence about long-term outcome effects of LTVEM and to establish its clinical utility.

Automated seizure detection using wearable devices: A clinical practice guideline of the International League Against Epilepsy and the International Federation of Clinical Neurophysiology.

The objective of this clinical practice guideline (CPG) is to provide recommendations for healthcare personnel working with patients with epilepsy on the use of wearable devices for automated seizure detection in patients with epilepsy, in outpatient, ambulatory settings. The Working Group of the International League Against Epilepsy (ILAE) and the International Federation of Clinical Neurophysiology (IFCN) developed the CPG according to the methodology proposed by the ILAE Epilepsy Guidelines Working Group. We reviewed the published evidence using The Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) statement and evaluated the evidence and formulated the recommendations following the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system. We found high level of evidence for the accuracy of automated detection of generalized tonic-clonic seizures (GTCS) and focal-to-bilateral tonic-clonic seizures (FBTCS) and recommend the use of wearable automated seizure detection devices for selected patients when accurate detection of GTCS and FBTCS is recommended as a clinical adjunct. We also found a moderate level of evidence for seizure types without GTCS or FBTCS. However, it was uncertain whether the detected alarms resulted in meaningful clinical outcomes for the patients. We recommend using clinically validated devices for automated detection of GTCS and FBTCS, especially in unsupervised patients, where alarms can result in rapid intervention (weak/conditional recommendation). At present, we do not recommend clinical use of the currently available devices for other seizure types (weak/conditional recommendation). Further research and development are needed to improve the performance of automated seizure detection and to document their accuracy and clinical utility.

Clinical Characteristics and Current Medical Practice in a Group of Sudanese Patients with Epilepsy: A Cross Sectional Hospital Based-Study

Introduction: The epilepsy classification in under developed countries faces many difficulties in reporting, work-up and management strategies. Exploring local practice in general hospitals will positively add to the welfare of patients with epilepsy. The objectives of this study were to assess the current medical practice in epilepsy work up and to study the selection of AEDs as per ILAE guidelines. Methods: This was a cross sectional-retrospective hospital based study, conducted between April and September 2016 in Omdurman Teaching Hospital, Khartoum, Sudan. Patients aged 18 years old and above were enrolled. Epilepsy was defined as having at least two non-provoked seizures in the least 6 months in a patient who was assessed by clinical review and electroencephalogram (EEG). Epilepsy was classified as generalized, focal or unclassified. Medications refer to all internationally licensed antiepileptic medications (AEDs) in 2016. Results: One hundred adult Sudanese patients were enrolled for this study. The most common event described during the ictal phase was tongue biting in 50% of participants followed by body stiffness in 46%. Epilepsy was classified as generalized in 84%, focal in 11% and unclassified in 5% patients. In generalized epilepsy, the MRI detected 23.3% abnormal findings higher than the CT which detected 14.8% (4/27), p value = 0.032. In focal epilepsy, the CT detected 75% abnormal findings higher than the MRI which detected 33.3%, p value = 0.02. The AEDs used were as follows: Carbamazepine (CBZ) 48%, Na valproate (VP) 33%, Lamotrigine (LMT) 2%, Levetricetan (LVT) 1%, CBZ + VP 14% and CBZ + Oxcarbazepine (OXC) 2%. Conclusion: The current medical practice in Omdurman teaching hospital should be modified to match the international league against epilepsy (ILAE) guidelines in workup, management, AEDs selection and classification of epilepsy.

Seizures

Abstract: Epilepsy is a common disease that affects 1.5 million women of childbearing age in the United States. Approximately 24,000 women with epilepsy give birth each year. The challenges for women with epilepsy extend from menarche to postmenopause, including prepregnancy, pregnancy, intrapartum and postpartum periods, menopause, and postreproductive age. The most up-to-date neurology and epilepsy guidelines provided in this monograph will enable obstetrician–gynecologists to provide care to women with this complex condition across the life span.

The Human Phenotype Ontology in 2021.

The Human Phenotype Ontology (HPO, https://hpo.jax.org) was launched in 2008 to provide a comprehensive logical standard to describe and computationally analyze phenotypic abnormalities found in human disease. The HPO is now a worldwide standard for phenotype exchange. The HPO has grown steadily since its inception due to considerable contributions from clinical experts and researchers from a diverse range of disciplines. Here, we present recent major extensions of the HPO for neurology, nephrology, immunology, pulmonology, newborn screening, and other areas. For example, the seizure subontology now reflects the International League Against Epilepsy (ILAE) guidelines and these enhancements have already shown clinical validity. We present new efforts to harmonize computational definitions of phenotypic abnormalities across the HPO and multiple phenotype ontologies used for animal models of disease. These efforts will benefit software such as Exomiser by improving the accuracy and scope of cross-species phenotype matching. The computational modeling strategy used by the HPO to define disease entities and phenotypic features and distinguish between them is explained in detail.We also report on recent efforts to translate the HPO into indigenous languages. Finally, we summarize recent advances in the use of HPO in electronic health record systems.

Clinical sequencing yield in epilepsy, autism spectrum disorder, and intellectual disability: A systematic review and meta-analysis.

ObjectiveClinical genetic sequencing is frequently utilized to diagnose individuals with neurodevelopmental disorders (NDDs). Here we perform a meta‐analysis and systematic review of the success rate (diagnostic yield) of clinical sequencing through next‐generation sequencing (NGS) across NDDs. We compare the genetic testing yield across NDD subtypes and sequencing technology.MethodsWe performed a systematic review of the PubMed literature until May 2020. We included clinical sequencing studies that utilized NGS in individuals with epilepsy, autism spectrum disorder (ASD), or intellectual disability (ID). Data were extracted, reviewed, and categorized according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines. Two investigators performed clinical evaluation and grouping following the International League Against Epilepsy (ILAE) guidelines. Pooled rates of the diagnostic yield and 95% confidence intervals were estimated with a random‐effects model.ResultsWe identified 103 studies (epilepsy, N = 72; ASD, N = 14; ID, N = 21) across 32,331 individuals. Targeted gene panel sequencing was used in 73, and exome sequencing in 36 cohorts. Given highly selected patient cohorts, the diagnostic yield was 17.1% for ASD, 24% for epilepsy, and 28.2% for ID (23.7% overall). The highest diagnostic yield for epilepsy subtypes was observed in individuals with ID (27.9%) and early onset seizures (36.8%). The diagnostic yield for exome sequencing was higher than for panel sequencing, even though not statistically significant (27.2% vs 22.6%, P = .071). We observed that clinical sequencing studies are performed predominantly in countries with a high Inequality‐adjusted Human Development Index (IHDI) (countries with sequencing studies: IHDI median = 0.84, interquartile range [IQR] = 0.09 vs countries without sequencing studies: IHDI median = 0.56, IQR = 0.3). No studies from Africa, India, or Latin America were identified, indicating potential barriers to genetic testing.SignificanceThis meta‐analysis and systematic review provides a comprehensive overview of clinical sequencing studies of NDDs and will help guide policymaking and steer decision‐making in patient management.

Update to the Hong Kong Epilepsy Guideline: evidence-based recommendations for clinical management of women with epilepsy throughout the reproductive cycle.

Update to the Hong Kong Epilepsy Guideline: evidence-based recommendations for clinical management of women with epilepsy throughout the reproductive cycle.

Transition of Care for Adolescent and Young Adult Patients on Dietary Therapy for Epilepsy

AbstractKetogenic diets are high-fat, low-carbohydrate diets designed to alter metabolism, induce nutritional ketosis, and reduce seizures in patients with epilepsy. In the past 15 to 20 years, the diets have been refined, gaining momentum in the treatment of resistant epilepsy. As ketogenic diets have gained popularity for treatment of pediatric epilepsies, an increasing number of adolescents treated with dietary therapy are approaching the age of transitioning their care to adult providers. Transition of care for this vulnerable population brings unique challenges posed by a paucity of adult providers who prescribe ketogenic diets, a lack of adult nutritionists trained in dietary therapy for epilepsy, and reluctance of pediatric patients to transition care. In this article, we will discuss the rationale for establishing transition protocols for young adult patients with epilepsy and present guidelines for transition of care for patients treated with dietary therapy for epilepsy.

A proposed guideline for vagus nerve stimulator handling in palliative care and after death.

Vagus nerve stimulation (VNS) is often used for patients with drug-resistant epilepsy. Although this intervention may improve seizure control and mood, a number of factors must be considered when patients with VNS near end of life. We reviewed relevant literature to create a proposed guideline for management of patients with VNS in palliative care and after death. VNS has multiple possible side effects, including cough and swallowing difficulties. For patients with neurologic disease in palliative care, such adverse effects can severely affect quality of life and increase the risk for complications such as aspiration pneumonia. Patients with VNS should be screened regularly for such side effects, and VNS parameters should be adjusted if they are identified. If a patient requires urgent cardiac resuscitation involving external defibrillation, the VNS should be interrogated immediately afterwards to evaluate its function. During defibrillation, paddles should be placed perpendicular to the VNS, and as far as possible away from it. The VNS can be acutely turned off by taping the magnet to the patient's chest, thereby preventing any possible interference with restoration of a normal heart rhythm. After death, any staff involved with handling the body should be notified that a VNS is in place. The device must be removed prior to cremation, as it can explode with high heat. If the cause of death is unclear, a full postmortem examination should be undertaken, per sudden unexpected death in epilepsy guidelines. If there is concern about device malfunction, the device should be returned to the manufacturer for evaluation.

Predictors of drug-resistance in epilepsy with auditory features

ObjectiveTo investigate predictors of drug-resistance in epilepsy with auditory features (EAF). MethodsDrug-resistant epilepsy (DRE) was defined according to International League Against Epilepsy guidelines. For univariate analysis, the chi-squared, Fisher’s exact, and Mann-Whitney test were used. Odds ratios (OR) and 95% confidence intervals (CIs) of predictors were estimated by logistic regression analyses. ResultsA total of 107 patients (52 male) between the ages of 13.0 and 78.8 years were included in this cohort. In univariate analysis, ten variables, including age at seizure onset < or = 10 years, febrile seizures, psychiatric disorders, seizures during sleep, multiple first ictal symptoms, electroencephalogram epileptiform discharges during waking, non-specific abnormalities in electroencephalogram, oxcarbazepine as the first drug, oxcarbazepine in the first two drugs and valproic acid in the first two drugs, showed possibilities as prognostic factors of EAF (p < 0.10). After logistic regression analyses, two positive predictors of drug-resistance, including age at seizures onset < or = 10 (OR = 6.37, 95% CI = 1.08–37.7, p = 0.041) and seizures during sleep (OR = 4.42, 95% CI = 1.45–13.48, p = 0.009) were found. Oxcarbazepine as the first AED is a negative predictive factor of drug-resistance (OR = 0.22, 95% CI = 0.06–0.84, p = 0.027). ConclusionsThree predictors may help early diagnosis of DRE in EAF. Early use of oxcarbazepine is a negative predictor of drug-resistance, which may provide an intervention point to minimize the risk of drug-resistance.

Reporting specifications regarding epilepsy practice guidelines based on the RIGHT reporting checklist: an analysis

ObjectiveClinical guidelines are designed to optimise patient care and provide efficient approaches for therapy. Epilepsy is a chronic brain disorder that continues to experience a considerable treatment gap due to...

Survey of epilepsy and seizure awareness in Manitoba: An evaluation

BackgroundEpilepsy and seizure awareness is gradually improving across Canada. With the strategic proposal for a Comprehensive Epilepsy Program in Manitoba (including formation of a new Pediatric Epilepsy Monitoring Unit (EMU)), a provincial strategy has been recommended outlining a path towards improved access to epilepsy care. We sought to qualify the current state of clinician knowledge and comfort towards diagnosis and management of this condition. MethodsA qualitative online survey (Survey of Epilepsy and Seizure Awareness in Manitoba: An Evaluation (SESAME)), comprised of 36 short-answer questions, was delivered to primary care and specialist physicians in Manitoba. ResultsOne hundred and eight subjects responded across varying medical disciplines. One hundred and one (93.5%) had previously managed patients with epilepsy, and 87 (80.6%) had previously ordered an electroencephalogram (EEG). A total of 63 (59.4%) had referred to a neurologist, with a lower proportion (30, 28.3%) referring specifically to an epileptologist. Only 36 respondents (33.3%) had heard of the International League Against Epilepsy (ILAE) guidelines. A total of 61 (56.5%) were unaware of invasive EEG techniques. Most (85, 78.7%) understood a role for surgery in treating epilepsy, with 12 (11.1%) unaware of surgical therapies beyond vagal nerve stimulation (VNS). Finally, less than half (44.2%) had heard about the Comprehensive Epilepsy Program in Manitoba, with nearly two-thirds (62.8%) indicating that they would like to have more information on epilepsy management. ConclusionsThe SESAME successfully identified strong awareness towards epilepsy, with identifiable lapses in knowledge that will benefit from a formal provincial-wide educational curriculum.

Standard and new treatments for epilepsy based on epilepsy guideline 2018

Standard and new treatments for epilepsy based on epilepsy guideline 2018