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OBJECTIVE: To investigate the repercussions of the war in Ukraine on people with epilepsy (PWE), focusing on access to health care, seizure control, quality of life (QoL), psychological distress, anxiety, and depression; and to identify the key factors influencing these measures. METHODS: Consecutive PWE, ≥18 years of age, presenting to one of seven health centers across Ukraine were invited to complete a self-administered survey in 2023. The survey gathered information on clinical and demographic aspects, geographic displacement, and access to care and medications. It also contained five valid questionnaires exploring psychological distress (Kessler-10), QoL with the EuroQOL-5D-5L (EQ-5D-5L), depression with the Neurological Disorders in Epilepsy scale (NDDIE), anxiety with the Hospital Anxiety and Depression Scalae-Anxiety (HADS-A), and epilepsy severity with the Global Assessment of the Severity of Epilepsy scale (GASE). Multivariate linear regression models assessed the relationship between measures of mental health and QoL and their potential predictors. Ethical approval was obtained from the Institute of Neurology, Psychiatry and Narcology of NAMS of Ukraine, Ukraine. RESULTS: Among 305 participants (mean age 38 years), 40% were female and 44% had to change residence because of the war. Seizures worsened during the war in 52% of those with active epilepsy and 42% of those with well-controlled epilepsy. Difficulties accessing health care and anti-seizure medications occurred in 25% and 34% of PWE, respectively, and was worse among those who were displaced. According to the mental health instruments, 46% suffered psychological distress, 62% experienced anxiety, 50% were depressed, and 59% rated their epilepsy as somewhat severe or worse. Statistically significant predictors of psychological distress, anxiety, and depression included female gender, more severe epilepsy, increased seizures during the war, and requiring mental health support. SIGNIFICANCE: The war significantly disrupted access to health care and availability of medication in PWE, who suffer from significant anxiety, depression, and psychological distress. We identify high-risk factors that can guide resource allocation for prevention and treatment.
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A variety of terms, such as "antiepileptic," "anticonvulsant," and "antiseizure" have been historically applied to medications for the treatment of seizure disorders. Terminology is important because using terms that do not accurately reflect the action of specific treatments may result in a misunderstanding of their effects and inappropriate use. The present International League Against Epilepsy (ILAE) position paper used a Delphi approach to develop recommendations on English-language terminology applicable to pharmacological agents currently approved for treating seizure disorders. There was consensus that these medications should be collectively named "antiseizure medications". This term accurately reflects their primarily symptomatic effect against seizures and reduces the possibility of health care practitioners, patients, or caregivers having undue expectations or an incorrect understanding of the real action of these medications. The term "antiseizure" to describe these agents does not exclude the possibility of beneficial effects on the course of the disease and comorbidities that result from the downstream effects of seizures, whenever these beneficial effects can be explained solely by the suppression of seizure activity. It is acknowledged that other treatments, mostly under development, can exert direct favorable actions on the underlying disease or its progression, by having "antiepileptogenic" or "disease-modifying" effects. A more-refined terminology to describe precisely these actions needs to be developed.
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Epilepsia , Humanos , Epilepsia/tratamiento farmacológico , Epilepsia/etiología , Anticonvulsivantes/uso terapéutico , Terapia Conductista , Consenso , CuidadoresRESUMEN
OBJECTIVE: This study was undertaken to develop a multimodal machine learning (ML) approach for predicting incident depression in adults with epilepsy. METHODS: We randomly selected 200 patients from the Calgary Comprehensive Epilepsy Program registry and linked their registry-based clinical data to their first-available clinical electroencephalogram (EEG) and magnetic resonance imaging (MRI) study. We excluded patients with a clinical or Neurological Disorders Depression Inventory for Epilepsy (NDDI-E)-based diagnosis of major depression at baseline. The NDDI-E was used to detect incident depression over a median of 2.4 years of follow-up (interquartile range [IQR] = 1.5-3.3 years). A ReliefF algorithm was applied to clinical as well as quantitative EEG and MRI parameters for feature selection. Six ML algorithms were trained and tested using stratified threefold cross-validation. Multiple metrics were used to assess model performances. RESULTS: Of 200 patients, 150 had EEG and MRI data of sufficient quality for ML, of whom 59 were excluded due to prevalent depression. Therefore, 91 patients (41 women) were included, with a median age of 29 (IQR = 22-44) years. A total of 42 features were selected by ReliefF, none of which was a quantitative MRI or EEG variable. All models had a sensitivity > 80%, and five of six had an F1 score ≥ .72. A multilayer perceptron model had the highest F1 score (median = .74, IQR = .71-.78) and sensitivity (84.3%). Median area under the receiver operating characteristic curve and normalized Matthews correlation coefficient were .70 (IQR = .64-.78) and .57 (IQR = .50-.65), respectively. SIGNIFICANCE: Multimodal ML using baseline features can predict incident depression in this population. Our pilot models demonstrated high accuracy for depression prediction. However, overall performance and calibration can be improved. This model has promise for identifying those at risk for incident depression during follow-up, although efforts to refine it in larger populations along with external validation are required.
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OBJECTIVE: The aim was to compare the outcomes of subdural electrode (SDE) implantations versus stereotactic electroencephalography (SEEG), the 2 predominant methods of intracranial electroencephalography (iEEG) performed in difficult-to-localize drug-resistant focal epilepsy. METHODS: The Surgical Therapies Commission of the International League Against Epilepsy created an international registry of iEEG patients implanted between 2005 and 2019 with ≥1 year of follow-up. We used propensity score matching to control exposure selection bias and generate comparable cohorts. Study endpoints were: (1) likelihood of resection after iEEG; (2) seizure freedom at last follow-up; and (3) complications (composite of postoperative infection, symptomatic intracranial hemorrhage, or permanent neurological deficit). RESULTS: Ten study sites from 7 countries and 3 continents contributed 2,012 patients, including 1,468 (73%) eligible for analysis (526 SDE and 942 SEEG), of whom 988 (67%) underwent subsequent resection. Propensity score matching improved covariate balance between exposure groups for all analyses. Propensity-matched patients who underwent SDE had higher odds of subsequent resective surgery (odds ratio [OR] = 1.4, 95% confidence interval [CI] 1.05, 1.84) and higher odds of complications (OR = 2.24, 95% CI 1.34, 3.74; unadjusted: 9.6% after SDE vs 3.3% after SEEG). Odds of seizure freedom in propensity-matched resected patients were 1.66 times higher (95% CI 1.21, 2.26) for SEEG compared with SDE (unadjusted: 55% seizure free after SEEG-guided resections vs 41% after SDE). INTERPRETATION: In comparison to SEEG, SDE evaluations are more likely to lead to brain surgery in patients with drug-resistant epilepsy but have more surgical complications and lower probability of seizure freedom. This comparative-effectiveness study provides the highest feasible evidence level to guide decisions on iEEG. ANN NEUROL 2021;90:927-939.
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Mapeo Encefálico/métodos , Electroencefalografía/métodos , Epilepsia/cirugía , Procedimientos Neuroquirúrgicos/métodos , Convulsiones/cirugía , Técnicas Estereotáxicas , Adulto , Electrodos Implantados , Femenino , Humanos , Masculino , Persona de Mediana Edad , Resultado del Tratamiento , Adulto JovenRESUMEN
OBJECTIVE: The relationship between antiseizure medications (ASMs), which improve health outcomes by controlling seizures, and health-related quality of life (HRQOL) is poorly understood and may involve intermediate variables. We evaluated the potential mediators of the association between ASMs and HRQOL. METHODS: Data are from an outpatient registry of adult patients with epilepsy seen at the Foothills Medical Center, Calgary, Alberta, Canada. Quality of life was measured using the 10-item Quality of Life in Epilepsy, and depression was measured using the Neurological Disorders Depression Inventory for Epilepsy. Propensity score matching was used to adjust for covariate imbalance between patients who received a single ASM (monotherapy) and those who received two or more ASMs (polytherapy) due to confounding. Mediation analysis was used to estimate the mediating effects of depression and ASM side effects on the association between patients' ASM polytherapy and HRQOL. RESULTS: Of 778 patients included in this analysis, 274 (35.2%) were on two or more ASMs. Patient-reported depression and ASM side effects jointly mediated the association between ASMs and HRQOL; these mediators accounted for 42% of the total average effect of ASM polytherapy ( ß = -13.6, 95% confidence interval = -18.2 to -8.6) on HRQOL. SIGNIFICANCE: These findings highlight the importance of managing depression and ASM side effects for improving health outcomes of patients requiring treatment with ASMs. Intervention programs aimed at improving HRQOL of patients with epilepsy need to target these potential mediators.
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Efectos Colaterales y Reacciones Adversas Relacionados con Medicamentos , Epilepsia , Adulto , Alberta/epidemiología , Anticonvulsivantes/efectos adversos , Epilepsia/inducido químicamente , Epilepsia/tratamiento farmacológico , Humanos , Análisis de Mediación , Calidad de Vida , Convulsiones/inducido químicamente , Convulsiones/tratamiento farmacológicoRESUMEN
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.
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Comités Consultivos , Epilepsia , Epilepsia/diagnóstico , Epilepsia/terapia , HumanosRESUMEN
OBJECTIVE: This is a systematic review aimed at summarizing the evidence related to instruments that have been developed to measure stigma or attitudes toward epilepsy and on stigma-reducing interventions. METHODS: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) standards. A broad literature search (1985-2019) was performed in 13 databases. Articles were included if they described the development and testing of psychometric properties of an epilepsy-related stigma or attitude scale or stigma-reducing interventions. Two reviewers independently screened abstracts, reviewed full-text articles, and extracted data. Basic descriptive statistics are reported. RESULTS: We identified 4234 abstracts, of which 893 were reviewed as full-text articles. Of these, 38 met inclusion criteria for an instrument development study and 30 as a stigma-reduction intervention study. Most instruments were initially developed using well-established methods and were tested in relatively large samples. Most intervention studies involved educational programs for adults with pre- and post-evaluations of attitudes toward people with epilepsy. Intervention studies often failed to use standardized instruments to quantify stigmatizing attitudes, were generally underpowered, and often found no evidence of benefit or the benefit was not sustained. Six intervention studies with stigma as the primary outcome had fewer design flaws and showed benefit. Very few or no instruments were validated for regional languages or culture, and there were very few interventions tested in some regions. SIGNIFICANCE: Investigators in regions without instruments should consider translating and further developing existing instruments rather than initiating the development of new instruments. Very few stigma-reduction intervention studies for epilepsy have been conducted, study methodology in general was poor, and standardized instruments were rarely used to measure outcomes. To accelerate the development of effective epilepsy stigma-reduction interventions, a paradigm shift from disease-specific, siloed trials to collaborative, cross-disciplinary platforms based upon unified theories of stigma transcending individual conditions will be needed.
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Epilepsia , Estigma Social , Adulto , Comités Consultivos , Actitud , Epilepsia/diagnóstico , Humanos , PsicometríaRESUMEN
OBJECTIVE: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors. METHODS: Thirteen databases were searched (1985-2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy. RESULTS: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status. SIGNIFICANCE: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.
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Epilepsia , Calidad de Vida , Epilepsia/epidemiología , Conocimientos, Actitudes y Práctica en Salud , Humanos , Convulsiones , Estigma Social , Encuestas y CuestionariosRESUMEN
The International League Against Epilepsy (ILAE) Task Force on Nosology and Definitions proposes a classification and definition of epilepsy syndromes in the neonate and infant with seizure onset up to 2 years of age. The incidence of epilepsy is high in this age group and epilepsy is frequently associated with significant comorbidities and mortality. The licensing of syndrome specific antiseizure medications following randomized controlled trials and the development of precision, gene-related therapies are two of the drivers defining the electroclinical phenotypes of syndromes with onset in infancy. The principal aim of this proposal, consistent with the 2017 ILAE Classification of the Epilepsies, is to support epilepsy diagnosis and emphasize the importance of classifying epilepsy in an individual both by syndrome and etiology. For each syndrome, we report epidemiology, clinical course, seizure types, electroencephalography (EEG), neuroimaging, genetics, and differential diagnosis. Syndromes are separated into self-limited syndromes, where there is likely to be spontaneous remission and developmental and epileptic encephalopathies, diseases where there is developmental impairment related to both the underlying etiology independent of epileptiform activity and the epileptic encephalopathy. The emerging class of etiology-specific epilepsy syndromes, where there is a specific etiology for the epilepsy that is associated with a clearly defined, relatively uniform, and distinct clinical phenotype in most affected individuals as well as consistent EEG, neuroimaging, and/or genetic correlates, is presented. The number of etiology-defined syndromes will continue to increase, and these newly described syndromes will in time be incorporated into this classification. The tables summarize mandatory features, cautionary alerts, and exclusionary features for the common syndromes. Guidance is given on the criteria for syndrome diagnosis in resource-limited regions where laboratory confirmation, including EEG, MRI, and genetic testing, might not be available.
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Epilepsia Generalizada , Epilepsia , Síndromes Epilépticos , Electroencefalografía , Epilepsia/diagnóstico , Epilepsia/genética , Humanos , Lactante , Recién Nacido , Convulsiones/diagnósticoRESUMEN
Epilepsy syndromes have been recognized for >50 years, as distinct electroclinical phenotypes with therapeutic and prognostic implications. Nonetheless, no formally accepted International League Against Epilepsy (ILAE) classification of epilepsy syndromes has existed. The ILAE Task Force on Nosology and Definitions was established to reach consensus regarding which entities fulfilled criteria for an epilepsy syndrome and to provide definitions for each syndrome. We defined an epilepsy syndrome as "a characteristic cluster of clinical and electroencephalographic features, often supported by specific etiological findings (structural, genetic, metabolic, immune, and infectious)." The diagnosis of a syndrome in an individual with epilepsy frequently carries prognostic and treatment implications. Syndromes often have age-dependent presentations and a range of specific comorbidities. This paper describes the guiding principles and process for syndrome identification in both children and adults, and the template of clinical data included for each syndrome. We divided syndromes into typical age at onset, and further characterized them based on seizure and epilepsy types and association with developmental and/or epileptic encephalopathy or progressive neurological deterioration. Definitions for each specific syndrome are contained within the corresponding position papers.
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Epilepsia Generalizada , Epilepsia , Síndromes Epilépticos , Electroencefalografía/efectos adversos , Epilepsia/diagnóstico , Epilepsia/etiología , Epilepsia Generalizada/complicaciones , Síndromes Epilépticos/complicaciones , Humanos , Convulsiones/diagnósticoRESUMEN
In 2017, the International League Against Epilepsy (ILAE) Classification of Epilepsies described the "genetic generalized epilepsies" (GGEs), which contained the "idiopathic generalized epilepsies" (IGEs). The goal of this paper is to delineate the four syndromes comprising the IGEs, namely childhood absence epilepsy, juvenile absence epilepsy, juvenile myoclonic epilepsy, and epilepsy with generalized tonic-clonic seizures alone. We provide updated diagnostic criteria for these IGE syndromes determined by the expert consensus opinion of the ILAE's Task Force on Nosology and Definitions (2017-2021) and international external experts outside our Task Force. We incorporate current knowledge from recent advances in genetic, imaging, and electroencephalographic studies, together with current terminology and classification of seizures and epilepsies. Patients that do not fulfill criteria for one of these syndromes, but that have one, or a combination, of the following generalized seizure types: absence, myoclonic, tonic-clonic and myoclonic-tonic-clonic seizures, with 2.5-5.5 Hz generalized spike-wave should be classified as having GGE. Recognizing these four IGE syndromes as a special grouping among the GGEs is helpful, as they carry prognostic and therapeutic implications.
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Epilepsia Tipo Ausencia , Epilepsia Generalizada , Niño , Electroencefalografía , Epilepsia Generalizada/diagnóstico , Epilepsia Generalizada/genética , Humanos , Inmunoglobulina E , Convulsiones , SíndromeRESUMEN
The goal of this paper is to provide updated diagnostic criteria for the epilepsy syndromes that have a variable age of onset, based on expert consensus of the International League Against Epilepsy Nosology and Definitions Taskforce (2017-2021). We use language consistent with current accepted epilepsy and seizure classifications and incorporate knowledge from advances in genetics, electroencephalography, and imaging. Our aim in delineating the epilepsy syndromes that present at a variable age is to aid diagnosis and to guide investigations for etiology and treatments for these patients.
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Epilepsia , Síndromes Epilépticos , Comités Consultivos , Electroencefalografía/efectos adversos , Epilepsia/complicaciones , Epilepsia/diagnóstico , Síndromes Epilépticos/complicaciones , Humanos , Convulsiones/diagnósticoRESUMEN
OBJECTIVE: We aimed to assess the reliability and validity of single-item global ratings (GR) of satisfaction with epilepsy surgery. METHODS: We recruited 240 patients from four centers in Canada and Sweden who underwent epilepsy surgery ≥1 year earlier. Participants completed a validated questionnaire on satisfaction with epilepsy surgery (the ESSQ-19), plus a single-item GR of satisfaction with epilepsy surgery twice, 4-6 weeks apart. They also completed validated questionnaires on quality of life, depression, health state utilities, epilepsy severity and disability, medical treatment satisfaction and social desirability. Test-retest reliability of the GR was assessed with the intra-class correlation coefficient (ICC). Construct and criterion validity were examined with polyserial correlations between the GR measure of satisfaction and validated questionnaires and with the ESSQ-19 summary score. Non-parametric rank tests evaluated levels of satisfaction, and ROC analysis assessed the ability of GRs to distinguish among clinically different patient groups. RESULTS: Median age and time since surgery were 42 years (IQR 32-54) and 5 years (IQR 2-8), respectively. The GR demonstrated good to excellent test-retest reliability (ICC = 0.76; 95% CI 0.67-0.84) and criterion validity (0.85; 95% CI 0.81-0.89), and moderate correlations in the expected direction with instruments assessing quality of life (0.59; 95% CI 0.51-0.63), health utilities (0.55; 95% CI 0.45-0.65), disability (-0.51; 95% CI -0.41, -0.61), depression (-0.48; 95% CI -0.38, -0.58), and epilepsy severity (-0.48; 95% CI -0.38, -0.58). As expected, correlations were lower for social desirability (0.40; 95% CI 0.28-0.52) and medical treatment satisfaction (0.33; 95% CI 0.21-0.45). The GR distinguished participants who were seizure-free (AUC 0.75; 95% CI 0.67-0.82), depressed (AUC 0.75; 95% CI 0.67-0.83), and self-rated as having more severe epilepsy (AUC 0.78; 95% CI 0.71-0.85) and being more disabled (AUC 0.82; 95% CI 0.74-0.90). SIGNIFICANCE: The GR of epilepsy surgery satisfaction showed good measurement properties, distinguished among clinically different patient groups, and appears well-suited for use in clinical practice and research.
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Epilepsia , Satisfacción Personal , Epilepsia/cirugía , Humanos , Psicometría , Calidad de Vida , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
Epilepsy surgery is the treatment of choice for patients with drug-resistant seizures. A timely evaluation for surgical candidacy can be life-saving for patients who are identified as appropriate surgical candidates, and may also enhance the care of nonsurgical candidates through improvement in diagnosis, optimization of therapy, and treatment of comorbidities. Yet, referral for surgical evaluations is often delayed while palliative options are pursued, with significant adverse consequences due to increased morbidity and mortality associated with intractable epilepsy. The Surgical Therapies Commission of the International League Against Epilepsy (ILAE) sought to address these clinical gaps and clarify when to initiate a surgical evaluation. We conducted a Delphi consensus process with 61 epileptologists, epilepsy neurosurgeons, neurologists, neuropsychiatrists, and neuropsychologists with a median of 22 years in practice, from 28 countries in all six ILAE world regions. After three rounds of Delphi surveys, evaluating 51 unique scenarios, we reached the following Expert Consensus Recommendations: (1) Referral for a surgical evaluation should be offered to every patient with drug-resistant epilepsy (up to 70 years of age), as soon as drug resistance is ascertained, regardless of epilepsy duration, sex, socioeconomic status, seizure type, epilepsy type (including epileptic encephalopathies), localization, and comorbidities (including severe psychiatric comorbidity like psychogenic nonepileptic seizures [PNES] or substance abuse) if patients are cooperative with management; (2) A surgical referral should be considered for older patients with drug-resistant epilepsy who have no surgical contraindication, and for patients (adults and children) who are seizure-free on 1-2 antiseizure medications (ASMs) but have a brain lesion in noneloquent cortex; and (3) referral for surgery should not be offered to patients with active substance abuse who are noncooperative with management. We present the Delphi consensus results leading up to these Expert Consensus Recommendations and discuss the data supporting our conclusions. High level evidence will be required to permit creation of clinical practice guidelines.
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Epilepsia Refractaria , Epilepsia , Adulto , Niño , Consenso , Epilepsia Refractaria/psicología , Epilepsia/diagnóstico , Epilepsia/tratamiento farmacológico , Epilepsia/cirugía , Humanos , Derivación y Consulta , Convulsiones/diagnósticoRESUMEN
Ongoing challenges in diagnosing focal cortical dysplasia (FCD) mandate continuous research and consensus agreement to improve disease definition and classification. An International League Against Epilepsy (ILAE) Task Force (TF) reviewed the FCD classification of 2011 to identify existing gaps and provide a timely update. The following methodology was applied to achieve this goal: a survey of published literature indexed with ((Focal Cortical Dysplasia) AND (epilepsy)) between 01/01/2012 and 06/30/2021 (n = 1349) in PubMed identified the knowledge gained since 2012 and new developments in the field. An online survey consulted the ILAE community about the current use of the FCD classification scheme with 367 people answering. The TF performed an iterative clinico-pathological and genetic agreement study to objectively measure the diagnostic gap in blood/brain samples from 22 patients suspicious for FCD and submitted to epilepsy surgery. The literature confirmed new molecular-genetic characterizations involving the mechanistic Target Of Rapamycin (mTOR) pathway in FCD type II (FCDII), and SLC35A2 in mild malformations of cortical development (mMCDs) with oligodendroglial hyperplasia (MOGHE). The electro-clinical-imaging phenotypes and surgical outcomes were better defined and validated for FCDII. Little new information was acquired on clinical, histopathological, or genetic characteristics of FCD type I (FCDI) and FCD type III (FCDIII). The survey identified mMCDs, FCDI, and genetic characterization as fields for improvement in an updated classification. Our iterative clinico-pathological and genetic agreement study confirmed the importance of immunohistochemical staining, neuroimaging, and genetic tests to improve the diagnostic yield. The TF proposes to include mMCDs, MOGHE, and "no definite FCD on histopathology" as new categories in the updated FCD classification. The histopathological classification can be further augmented by advanced neuroimaging and genetic studies to comprehensively diagnose FCD subtypes; these different levels should then be integrated into a multi-layered diagnostic scheme. This update may help to foster multidisciplinary efforts toward a better understanding of FCD and the development of novel targeted treatment options.
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Epilepsia , Malformaciones del Desarrollo Cortical de Grupo I , Malformaciones del Desarrollo Cortical , Consenso , Epilepsia/diagnóstico , Epilepsia/patología , Humanos , Imagen por Resonancia Magnética , Malformaciones del Desarrollo Cortical/diagnóstico por imagen , Malformaciones del Desarrollo Cortical/genética , Malformaciones del Desarrollo Cortical de Grupo I/diagnóstico , Neuroimagen , Estudios RetrospectivosRESUMEN
OBJECTIVE: Satisfaction with epilepsy surgery in Mandarin-speaking countries remains unknown. We aimed to validate in our Taiwanese patients an existing instrument to measure patient satisfaction with epilepsy surgery, the 19-item Epilepsy Surgery Satisfaction Questionnaire (ESSQ-19). METHODS: Consecutive patients with epilepsy who received epilepsy surgery one year earlier in Taipei Veterans General Hospital were recruited and provided clinical and demographic data. The Mandarin version of the ESSQ-19 for the Taiwanese population and eight other questionnaires were completed to assess construct validity. To evaluate the validity and reliability of the tool, the data were analyzed by confirmatory factor analysis, Spearman's rank correlation, and internal consistency analysis. RESULTS: The study involved 120 patients (70 F/50 M, median age 35â¯years [IQRâ¯=â¯28-41]). The mean summary score (±SD) of the Tw-ESSQ-19 was 82.5⯱â¯14.5. The mean scores of the four domains were 90.3⯱â¯15.4 (surgical complications), 83.2⯱â¯16.7 (seizure control), 80.1⯱â¯17.3 (recovery from surgery), and 76.6⯱â¯18.3 (psychosocial functioning). The questionnaire was shown to have good construct validity with satisfactory goodness-of-fit of the data (standardized root mean square residualâ¯=â¯0.0492; comparative fit indexâ¯=â¯0.946). It also demonstrated good discriminant validity (being seizure free [AUC 0.78; 95% CI 0.68-0.89], endorsing depression [AUC 0.84; 95% CI 0.76-0.91], self-rating epilepsy as disabling [AUC 0.71; 95% CI 0.58-0.84], and self-rating epilepsy as severe [AUC 0.78; 95% CI 0.64-0.93]), high internal consistency in four domains (Cronbach's alphaâ¯=â¯0.83-0.96), and no significant floor/ceiling effects of the summary score. SIGNIFICANCE: The Mandarin version of the ESSQ-19 adapted for the Taiwanese population is a reliable and valid self-reported questionnaire for assessing patient satisfaction with epilepsy surgery.
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Epilepsia , Satisfacción Personal , Adulto , Epilepsia/cirugía , Humanos , Psicometría , Reproducibilidad de los Resultados , Encuestas y CuestionariosRESUMEN
Electroencephalography (EEG) is used to prognosticate recovery in comatose patients with hypoxic ischemic brain injury (HIBI) secondary to cardiac arrest. We sought to determine the prognostic use of specific EEG patterns for predicting disability and death following HIBI secondary to cardiac arrest. This systematic review searched Medline, Embase, and Cochrane Central up to January 2020. We included original research involving prospective and retrospective cohort studies relating specific EEG patterns to disability and death in comatose adult patients suffering HIBI post cardiac arrest requiring admission to an intensive care setting. We evaluated study quality using the Quality of Diagnostic Accuracy Studies 2 tool. Descriptive statistics were used to summarize study, patient, and EEG characteristics. We pooled study-level estimates of sensitivity and specificity for EEG patterns defined a priori using a random effect bivariate and univariate meta-analysis when appropriate. Funnel plots were used to assess publication bias. Of 5191 abstracts, 333 were reviewed in full text, of which 57 were included in the systematic review and 32 in meta-analyses. No reported EEG pattern was found to be invariably associated with death or disability across all studies. Pooled specificities of status epilepticus, burst suppression, and electrocerebral silence were high (92-99%), but sensitivities were low (6-39%) when predicting a composite outcome of disability and death. Study quality varied depending on domain; patient flow and timing performed was well conducted in all, whereas EEG interpretation was retrospective in 17 of 39 studies. Accounting for variable study quality, EEG demonstrates high specificity with a low risk of false negative outcome attribution for disability and death when status epilepticus, burst suppression, or electrocerebral silence is detected. Increased use of standardized cross-study protocols and definitions of EEG patterns are required to better evaluate the prognostic use of EEG for comatose patients with HIBI following cardiac arrest.
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Lesiones Encefálicas , Coma , Adulto , Coma/diagnóstico , Coma/etiología , Electroencefalografía/métodos , Humanos , Pronóstico , Estudios Prospectivos , Estudios RetrospectivosRESUMEN
Precision medicine can be distilled into a concept of accounting for an individual's unique collection of clinical, physiologic, genetic, and sociodemographic characteristics to provide patient-level predictions of disease course and response to therapy. Abundant evidence now allows us to determine how an average person with epilepsy will respond to specific medical and surgical treatments. This is useful, but not readily applicable to an individual patient. This has brought into sharp focus the desire for a more individualized approach through which we counsel people based on individual characteristics, as opposed to population-level data. We are now accruing data at unprecedented rates, allowing us to convert this ideal into reality. In addition, we have access to growing volumes of administrative and electronic health records data, biometric, imaging, genetics data, microbiome, and other "omics" data, thus paving the way toward phenome-wide association studies and "the epidemiology of one." Despite this, there are many challenges ahead. The collating, integrating, and storing sensitive multimodal data for advanced analytics remains difficult as patient consent and data security issues increase in complexity. Agreement on many aspects of epilepsy remains imperfect, rendering models sensitive to misclassification due to a lack of "ground truth." Even with existing data, advanced analytics models are prone to overfitting and often failure to generalize externally. Finally, uptake by clinicians is often hindered by opaque, "black box" algorithms. Systematic approaches to data collection and model generation, and an emphasis on education to promote uptake and knowledge translation, are required to propel epilepsy-based precision medicine from the realm of the theoretical into routine clinical practice.
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Algoritmos , Análisis de Datos , Recolección de Datos/métodos , Registros Electrónicos de Salud , Epilepsia/terapia , Medicina de Precisión/métodos , Recolección de Datos/tendencias , Registros Electrónicos de Salud/tendencias , Epilepsia/diagnóstico , Humanos , Medicina de Precisión/tendenciasRESUMEN
OBJECTIVE: This study was undertaken to identify clusters of adult onset epilepsy with distinct comorbidities and risks of early and late death. METHODS: This was a retrospective open cohort study that included all adults meeting a case definition for epilepsy after the Acceptable Mortality Recording date in the Health Improvement Network database for the years 2000-2012 inclusive. Unsupervised agglomerative hierarchical clustering was performed to identify unique clusters of patients based on their predicted risk of early (<4 years of epilepsy diagnosis) and late (≥4 years from diagnosis) mortality and patient-level clinical characteristics. RESULTS: We identified 10 499 presumed incident cases of epilepsy from 11 194 182 patients. Four phenotypic clusters were identified in the early and late risk periods. Early clusters include older adults with cardiovascular disease and a high risk of death (median predicted risk = 20%, interquartile range [IQR] = 9%-31%), a group with moderate risk of death and cancer (median predicted risk = 6%, IQR = 2%-15%), a group with psychiatric disease/substance use and few somatic comorbidities (median predicted risk = 5%, IQR = 2%-9%), and one with a younger age at onset and few comorbidities (median predicted risk = 4%, IQR = 1%-11%). There was minimal movement of individuals between clusters for those surviving the early risk period. Age- and sex-standardized 3-year mortality ratios were more than sixfold higher than the general population for every cluster, even those primarily comprised of healthy younger adults. SIGNIFICANCE: Adult onset epilepsy is marked by unique clusters of comorbid conditions and elevated risks of death that form discrete populations for targeted therapeutic interventions. These clusters remain relatively stable between the early and late mortality risk periods. Of particular interest are the clusters marked by young and otherwise healthy adults whose standardized mortality ratio is sixfold higher than general population despite few conventional risk factors for premature death.
Asunto(s)
Epilepsia , Estudios de Cohortes , Comorbilidad , Epilepsia/epidemiología , Humanos , Mortalidad Prematura , Estudios RetrospectivosRESUMEN
The World Health Organization (WHO) has recognized epilepsy as a public health imperative due to its occurrence at all ages in all regions of the world, its high impact on disability-adjusted life years and psychosocial aspects, and the accompanying stigma. The International League Against Epilepsy and the International Bureau for Epilepsy have established crucial collaborations with regional and global organizations to promote epilepsy as a treatable disease, close the treatment gap in care, education, and research, and eradicate stigma. In November 2020, the efforts of these three organizations-with support from WHO member states, the World Federation of Neurology, and the European Federation of Neurological Associations-culminated in the unanimous approval of a WHO resolution to create and implement an Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. This unique achievement is built on more than 2 decades of collaboration and effort, and heralds extraordinary opportunities to work toward a world where no person's life is limited by epilepsy.