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Abstract Objective To characterize the experience of people with epilepsy and aligned healthcare workers (HCWs) during the first 18 months of the COVID‐19 pandemic and compare experiences in high‐income countries (HICs) with non‐HICs. Methods Separate surveys for people with epilepsy and HCWs were distributed online in April 2020. Responses were collected to September 2021. Data were collected for COVID‐19 infections, the effect of COVID‐related restrictions, access to specialist help for epilepsy (people with epilepsy), and the impact of the pandemic on work productivity (HCWs). The frequency of responses for non‐HICs and HICs were compared using non‐parametric Chi‐square tests. Results Two thousand one hundred and five individuals with epilepsy from 53 countries and 392 HCWs from 26 countries provided data. The same proportion of people with epilepsy in non‐HICs and HICs reported COVID‐19 infection (7%). Those in HICs were more likely to report that COVID‐19 measures had affected their health (32% vs. 23%; p

Abstract Objective Using Optical coherence tomography (OCT), we evaluated the association between peripapillary retinal nerve fiber, macular thickness, macular ganglion cell‐inner plexiform layer, and drug resistance. Methods In this cross‐sectional study, we recruited people diagnosed with epilepsy and healthy controls. People with epilepsy were further stratified as drug‐resistant or non‐drug‐resistant based on their response to anti‐seizure medications. OCT measurements were conducted, and findings in right eye were analyzed. Results Fifty‐one drug‐resistant participants, 37 non‐drug‐resistant, and 45 controls were enrolled. The average peripapillary retinal nerve fiber layer, ganglion cell‐inner plexiform layer, and macular thickness were thinner in the epilepsy groups than in controls. The drug‐resistant group had significantly lower average ganglion cell‐inner plexiform layer thickness (p = 0.004) and a higher proportion of abnormal/borderline GC/IPL thickness (p = 5.40E‐04) than the non‐drug‐resistant group. Nevertheless, no significant differences were seen between the average thickness of peripapillary retinal nerve fiber and macular thickness. The temporal sectors of these three parameters were also significantly thinner in the drug‐resistant group than in the non‐drug‐resistant. In a multivariate regression model, drug resistance was an independent predictor of reduced ganglion cell‐inner plexiform thickness (Odds ratios OR = 10.25, 95% CI 2.82 to 37.28). Increased seizure frequency (r = −0.23, p = 0.039) and a higher number of anti‐seizure medications ever used (r = −0.27, p = 0.013) were negatively associated with ganglion cell‐inner plexiform layer thickness. Significance Individuals with drug‐resistant epilepsy had a consistent reduction in average ganglion cell‐inner plexiform layer thickness and the temporal sector of peripapillary retinal nerve fiber layer and macular thickness. This suggests that ganglion cell‐inner plexiform layer thickness could potentially serve as an indicator of the burden of drug resistance, as it correlated with reduced thickness in individuals having more frequent seizures and greater exposure to ASMs. Plain Language Summary In our study, we used a special tool called OCT to measure how thick the retina is in people with epilepsy and in healthy control. We found that the retina was consistently thinner in all areas for those with epilepsy compared to healthy control. Particularly, a specific layer called the ganglion cell‐inner plexiform layer was a lot thinner in the group that didn't respond to medications, and this thinning was related to how often seizures occurred and how much medications were taken. Also, certain parts of the retina were thinner in the drug‐resistant group.

Abstract Background Epilepsy remains a significant public health concern in Tanzania, with affected individuals enduring stigma, whether through actions or perceptions. Myths, misunderstandings, and misconceptions about epilepsy have persisted due to a multitude of factors. Here, we assessed attitudes and perceptions toward epilepsy in Mahenge. Methods A cross-sectional study utilising a mixed-methods approach was undertaken in eight villages in the Ulanga district of Mahenge, integrating a semi-structured questionnaire and focus group discussions (FGDs). The questionnaire involved 778 community members, and 15 FGDs were conducted (seven groups with people with epilepsy and eight without). Descriptive statistics, chi-square, and logistic regression were used for quantitative analysis, while we used NVivo version 14 for thematic analysis of qualitative data. Results Of 778 participants, over half were women (425, 54.6%) with a median age of 41 years (IQR: 30–55) and most had completed primary education (79.9%). The majority of participants were aware of epilepsy (96.8%), yet they displayed low knowledge (51%), negative attitudes (45.5%), and perceptions (42.1%) towards the disorder. A low level of understanding was significantly associated with negative attitudes (Adjusted Odds Ratio [AOR] = 1.89, 95%CI: 1.41–2.53) and perceptions (AOR = 3.22, 95%CI: 2.05–5.04) towards epilepsy. In the qualitative analysis, often hereditary factors and infections were named as causes of epilepsy, along with misconceptions involving witchcraft and divine punishment. There was also a misconception about the contagiousness of epilepsy. Traditional healers were often the initial point of treatment. Epilepsy-related stigma was evident, with individuals with epilepsy facing derogatory labels, social isolation, and barriers to education. Lastly, there was a lack of understanding regarding a possible association between epilepsy and onchocerciasis. Conclusions Despite high awareness of epilepsy, there is insufficient understanding, negative attitudes, and perceptions, including misconceptions and stigma about this neurologic condition. Community-based education programmes are essential for promoting proper healthcare-seeking behaviour and dispelling myths.

Abstract Objective To assess asymptomatic rates and severity of SARS‐CoV‐2 infection in people with epilepsy and their healthcare workers in a long‐term care facility which had implemented weekly surveillance testing between April 2020 and June 2022. Methods Questionnaires focused on objective and subjective COVID‐19 symptoms for people with epilepsy residing in and their healthcare workers at the Chalfont Centre for Epilepsy in June 2022. Demographic information, comorbidities, and seizure frequency were gathered from medical records. We also collected responses on objective and subjective COVID‐19 symptoms from healthcare workers who participated in a prospective study assessing the reaction to COVID‐19 vaccinations (SAFER). Results Fifty‐five out of 89 (62%) residents tested positive at least once on weekly PCR testing for SARS‐CoV‐2 during the period of interest; 20 of those (37%) were asymptomatic. In comparison, of those 63 healthcare workers who tested positive at least once on weekly testing during the same period, only four (6%) were asymptomatic. Of the 159 healthcare workers who also participated in the SAFER study, 41 tested positive at least once, and seven (17%) were completely asymptomatic during infection with SARS‐CoV‐2. Significance People with epilepsy living in a long‐term care facility were more likely to present with asymptomatic SARS‐CoV‐2 infections than healthcare workers at the same facility. Despite possible bias in the reporting of subjective symptoms due to management‐by‐proxy, there is no evidence that vulnerable people living in an epilepsy long‐term care facility showed reduced resilience towards infections. Plain Language Summary People with epilepsy living in care home facilities had a surprisingly high degree of asymptomatic infections with SARS‐CoV‐2. Very few residents had severe or fatal outcomes. This is in stark contrast to the widely reported bad outcomes for people without epilepsy in other care homes. People with epilepsy reported significantly less symptoms than their healthcare workers. No changes in seizure frequency during or after infection were observed.

Abstract Epilepsy is one of the most common neurologic conditions. Its clinical manifestations are not restricted to seizures but often include cognitive disturbances and psychiatric disorders. Prospective population-based studies have shown that people with epilepsy have an increased risk of developing mood disorders, and people with a primary mood disorder have an increased risk of developing epilepsy. The existence of common pathogenic mechanisms in epilepsy and mood disorders may explain the bidirectional relation between these two conditions. Recognition of a personal and family psychiatric history at the time of evaluation of people for a seizure disorder is critical in the selection of antiseizure medications: those with mood-stabilizing properties (e.g., lamotrigine, oxcarbazepine) should be favoured as a first option in those with a positive history while those with negative psychotropic properties (e.g., levetiracetam, topiramate) avoided. While mood disorders may be clinically identical in people with epilepsy, they often present with atypical manifestations that do not meet ICD or DSM diagnostic criteria. Failure to treat mood disorders in epilepsy may have a negative impact, increasing suicide risk and iatrogenic effects of antiseizure medications and worsening quality of life. Treating mood disorders in epilepsy is identical to those with primary mood disorders. Yet, there is a common misconception that antidepressants have proconvulsant properties. Most antidepressants are safe when prescribed at therapeutic doses. The incidence of seizures is lower in people randomized to antidepressants than placebo in multicenter randomized placebo-controlled trials of people treated for a primary mood disorder. Thus, there is no excuse not to prescribe antidepressant medications to people with epilepsy.

Abstract Objective To ascertain whether home‐based care with community and primary healthcare workers' support improves adherence to antiseizure medications, seizure control, and quality of life over routine clinic‐based care in community samples of people with epilepsy in a resource‐poor country. Methods Participants included consenting individuals with active epilepsy identified in a population survey in impoverished communities. The intervention included antiseizure medication provision, adherence reinforcement and epilepsy self‐ and stigma management guidance provided by a primary health care–equivalent worker. We compared the intervention group to a routine clinic‐based care group in a cluster‐randomized trial lasting 24 months. The primary outcome was antiseizure medication adherence, appraised from monthly pill counts. Seizure outcomes were assessed by monthly seizure aggregates and time to first seizure and impact by the Personal Impact of Epilepsy scale. Results Enrolment began on September 25, 2017 and was complete by July 24, 2018. Twenty‐four clusters, each comprising ten people with epilepsy, were randomized to either home‐ or clinic‐care. Home‐care recipients were more likely to have used up their monthly‐dispensed epilepsy medicine stock (regression coefficient: 0.585; 95% confidence intervals, 0.289‐0.881; P = 0.001) and had fewer seizures (regression coefficient: −2.060; 95%CI, −3.335 to −0.785; P = 0.002). More people from clinic‐care (n = 44; 37%) than home‐care (n = 23; 19%) exited the trial (P = 0.003). The time to first seizure, adverse effects and the personal impact of epilepsy were similar in the two arms. Significance Home care for epilepsy compared to clinic care in resource‐limited communities improves medication adherence and seizure outcomes and reduces the secondary epilepsy treatment gap.

Summary: The World Health Assembly approved the Intersectoral Global Action Plan for epilepsy and neurological disorders. Member states, including those in Southeast Asia, must now prepare to achieve IGAP's strategic targets by embracing novel approaches and strengthening existing policies and practices. We propose and present evidence to support four such processes. The opening course should engage all stakeholders to develop people-centric instead of outcome-centric approaches. Rather than caring for convulsive epilepsy alone, as currently done, primary care providers should also be skilled in diagnosing and treating focal and non-motor seizures. This could reduce the diagnostic gap as over half of epilepsies present with focal seizures. Currently, primary care providers lack knowledge and skills to manage focal seizures. Technology-enabled aids can help overcome this limitation. Lastly, there is need to add newer “easy to use” epilepsy medicines to Essential Medicines lists in light of emerging evidence for better tolerability, safety and user-friendliness.

Abstract Background Epilepsy is one of the most common neurological conditions worldwide. As a chronic condition, epilepsy imposes a significant burden on people with epilepsy and society. We aimed to assess the burden and unmet need of individuals with epilepsy and their caregivers, focusing on focal seizures, the main type of seizure in adults and children. Methods A targeted evidence review of the burden of epilepsy, focusing on focal seizures, was conducted to identify articles reporting: epidemiology, mortality, morbidity, quality of life (QoL), and costs. Results Focal seizures affect up to ∼61% of people with epilepsy. They are associated with an increased risk of injury and premature death than the general population. People with epilepsy also have high comorbidity, particularly depression, anxiety, and cognitive impairments. Higher seizure frequency, adverse treatment events, and employment concerns reduce QoL. A reduction in caregivers' QoL is also often reported. Epilepsy requires long‐term treatment accounting for high individual costs. Hospitalizations and antiseizure medications (ASMs) are the leading cost drivers of inpatient management and indirect costs with high unemployment rates, particularly in drug‐resistant populations. Despite the advent of new treatments, a high unmet need remains unaddressed; approximately 40% of people with epilepsy are drug‐resistant, further increasing the risks associated with epilepsy. Conclusions Our findings highlight a substantial burden of illness and unmet needs in individuals with focal seizures, especially those with drug‐resistant epilepsy. Suboptimal treatment options negatively impact QoL and, consequently, a sizeable economic burden indicating the need for new treatments and prioritizing this condition

Abstract Objective Resistance to antiseizure medications (ASMs) is one of the major concerns in the treatment of epilepsy. Despite the increasing number of ASMs available, the proportion of individuals with drug‐resistant epilepsy remains unchanged. In this study, we aimed to investigate the role of rare genetic variants in ASM resistance. Methods We performed exome sequencing of 1,128 individuals with non‐familial non‐acquired focal epilepsy (NAFE) (762 non‐responders, 366 responders) and were provided with 1,734 healthy controls. We undertook replication in a cohort of 350 individuals with NAFE (165 non‐responders, 185 responders). We performed gene‐based and gene‐set‐based kernel association tests to investigate potential enrichment of rare variants in relation to drug response status and to risk for NAFE. Results We found no gene or gene set that reached genome‐wide significance. Yet, we identified several prospective candidate genes – among them DEPDC5, which showed a potential association with resistance to ASMs. We found some evidence for an enrichment of truncating variants in dominant familial NAFE genes in our cohort of non‐familial NAFE and in association with drug‐resistant NAFE. Interpretation Our study identifies potential candidate genes for ASM resistance. Our results corroborate the role of rare variants for non‐familial NAFE and imply their involvement in drug‐resistant epilepsy. Future large‐scale genetic research studies are needed to substantiate these findings.

Abstract Artificial intelligence (AI)‐based diagnostic algorithms have achieved ambitious aims through automated image pattern recognition. For neurological disorders, this includes neurodegeneration and inflammation. Scalable imaging technology for big data in neurology is optical coherence tomography (OCT). We highlight that OCT changes observed in the retina, as a window to the brain, are small, requiring rigorous quality control pipelines. There are existing tools for this purpose. Firstly, there are human‐led validated consensus quality control criteria (OSCAR‐IB) for OCT. Secondly, these criteria are embedded into OCT reporting guidelines (APOSTEL). The use of the described annotation of failed OCT scans advances machine learning. This is illustrated through the present review of the advantages and disadvantages of AI‐based applications to OCT data. The neurological conditions reviewed here for the use of big data include Alzheimer disease, stroke, multiple sclerosis (MS), Parkinson disease, and epilepsy. It is noted that while big data is relevant for AI, ownership is complex. For this reason, we also reached out to involve representatives from patient organizations and the public domain in addition to clinical and research centers. The evidence reviewed can be grouped in a five‐point expansion of the OSCAR‐IB criteria to embrace AI (OSCAR‐AI). The review concludes by specific recommendations on how this can be achieved practically and in compliance with existing guidelines.

Abstract Objectives We ascertained the prevalence of ictal arrhythmias to explain the high rate of sudden unexpected death in epilepsy (SUDEP) in Dravet syndrome (DS). Methods We selected cases with clinical DS, ≥6 years, SCN1A mutation, and ≥1 seizure/week. Home‐based ECG recordings were performed for 20 days continuously. Cases were matched for age and sex to two epilepsy controls with no DS and ≥1 major motor seizure during video‐EEG. We determined the prevalence of peri‐ictal asystole, bradycardia, QTc changes, and effects of convulsive seizures (CS) on heart rate, heart rate variability (HRV), and PR/QRS. Generalized estimating equations were used to account for multiple seizures within subjects, seizure type, and sleep/wakefulness. Results We included 59 cases. Ictal recordings were obtained in 45 cases and compared to 90 controls. We analyzed 547 seizures in DS (300 CS) and 169 in controls (120 CS). No asystole occurred. Postictal bradycardia was more common in controls (n = 11, 6.5%) than cases (n = 4, 0.7%; P = 0.002). Peri‐ictal QTc‐lengthening (≥60ms) occurred more frequently in DS (n = 64, 12%) than controls (n = 8, 4.7%, P = 0.048); pathologically prolonged QTc was rare (once in each group). In DS, interictal HRV was lower compared to controls (RMSSD P = 0.029); peri‐ictal values did not differ between the groups. Prolonged QRS/PR was rare and more common in controls (QRS: one vs. none; PR: three vs. one). Interpretation We did not identify major arrhythmias in DS which can directly explain high SUDEP rates. Peri‐ictal QTc‐lengthening was, however, more common in DS. This may reflect unstable repolarization and an increased propensity for arrhythmias.

BackgroundIn epilepsy, cognitive difficulties are common, partly a consequence of anti-seizure medications (ASM), and cognitive side-effects are often considered to be more disabling than seizures and significantly affect quality of life. Functional MRI during verbal fluency tasks demonstrated impaired frontal activation patterns and failed default mode network deactivation in people taking ASM with unfavourable cognitive profiles. The cognitive effect of ASMs given at different dosages in monotherapy, or in different combinations, remains to be determined.MethodsHere, we compared the effects of different drug loads on verbal fluency functional MRI (fMRI) in people (i) taking dual therapy of ASMs either considered to be associated with moderate (levetiracetam, lamotrigine, lacosamide, carbamazepine/oxcarbazepine, eslicarbazepine, valproic acid; n = 119, 56 females) or severe (topiramate, zonisamide) side-effects; n = 119, 56 females), (ii) taking moderate ASMs in either mono-, dual- or triple-therapy (60 subjects in each group), or (iii) taking different dosages of ASMs with moderate side-effect profiles (n = 180). “Drug load” was defined as a composite value of numbers and dosages of medications, normalised to account for the highest and lowest dose of each specific prescribed medication.ResultsIn people taking “moderate” ASMs (n = 119), we observed higher verbal-fluency related to left inferior frontal gyrus and right inferior parietal fMRI activations than in people taking “severe” ASMs (n = 119). Irrespective of the specific ASM, people on monotherapy (n = 60), showed greater frontal activations than people taking two (n = 60), or three ASMs (n = 60). People on two ASMs showed less default mode (precuneus) deactivation than those on monotherapy. In people treated with “moderate” ASMs (n = 180), increased drug load correlated with reduced activation of language-related regions and the right piriform cortex.ConclusionOur study delineates the effects of polytherapy and high doses of ASMs when given in monotherapy on the functional anatomy of language. Irrespective of the cognitive profile of individual ASMs, each additional ASM results in additional alterations of cognitive activation patterns. Selection of ASMs with moderate cognitive side effects, and low doses of ASMs when given in polytherapy, could reduce the cognitive effect.

ABSTRACT Background: The burden of premature mortality associated with human cysticercosis is largely ignored mainly due to poor record-keeping in Taenia solium endemic regions. Objective: To document mortality and survival characteristics of an historical cohort with cysticercosis. Methods: The years of onset of symptoms and death untill 1957 were extracted from published reports of a British military cohort (n=450) examined in London in the early twentieth century. Data were entered into a Kaplan Meier survival analysis with the presence (or absence) of clinical manifestations as independent variables, which were then fitted into a Cox proportional hazards model to determine their significance. Results: Cysticercosis was responsible for 24 (52.2%) of 46 deaths in the first 15 years of follow-up in comparison to 7 (19.4%) of 36 deaths in the 20-40 years of follow-up period. In the univariate and Cox analyses, intracranial hypertension (hazard ratio [HR]: 8.26; CI: 4.71, 14.49), ocular cysticercosis (HR: 6.60; CI: 3.04, 14.33), and mental disorder (HR: 3.98; CI: 2.22, 7.13) but not epilepsy (HR: 0.66; CI: 0.20, 2.18) were associated with mortality. Over half of all deaths in the first 15 years of follow-up were attributed to cysticercosis. Conclusions: Several deaths occurred early after acquiring cysticercotic infection. Intracranial hypertension, ocular cysticercosis, and mental disorder but not epilepsy were predictors of mortality in this cohort.

Abstract Objective Clinical and genetic predictors of response to antiepileptic drugs (AEDs) are largely unknown. We examined predictors of lacosamide response in a real‐world clinical setting. Methods We tested the association of clinical predictors with treatment response using regression modeling in a cohort of people with refractory epilepsy. Genetic assessment for lacosamide response was conducted via genome‐wide association studies and exome studies, comprising 281 candidate genes. Results Most patients (479/483) were treated with LCM in addition to other AEDs. Our results corroborate previous findings that patients with refractory genetic generalized epilepsy (GGE) may respond to treatment with LCM. No clear clinical predictors were identified. We then compared 73 lacosamide responders, defined as those experiencing greater than 75% seizure reduction or seizure freedom, to 495 nonresponders (

Objective: Resistance to anti-seizure medications (ASMs) presents a significant hurdle in the treatment of people with epilepsy. Genetic markers for resistance to individual ASMs could support clinicians to make better-informed choices for their patients. In this study, we aimed to elucidate whether the response to individual ASMs was associated with common genetic variation.Methods: A cohort of 3,649 individuals of European descent with epilepsy was deeply phenotyped and underwent single nucleotide polymorphism (SNP)-genotyping. We conducted genome-wide association analyses (GWASs) on responders to specific ASMs or groups of functionally related ASMs, using non-responders as controls. We performed a polygenic risk score (PRS) analyses based on risk variants for epilepsy and neuropsychiatric disorders and ASM resistance itself to delineate the polygenic burden of ASM-specific drug resistance.Results: We identified several potential regions of interest but did not detect genome-wide significant loci for ASM-specific response. We did not find polygenic risk for epilepsy, neuropsychiatric disorders, and drug-resistance associated with drug response to specific ASMs or mechanistically related groups of ASMs.Significance: This study could not ascertain the predictive value of common genetic variants for ASM responder status. The identified suggestive loci will need replication in future studies of a larger scale.

Familial cortical myoclonic tremor (FAME) has so far been mapped to regions on chromosome 2, 3, 5 and 8 and pentameric repeat expansions in SAMD12 were identified as cause of FAME1. Here, Corbett et al. identify ATTTT/ATTTC repeat expansions in intron 1 of STARD7 in individuals with FAME2.”

Abstract Objective To study the effectiveness and tolerability of antiepileptic drugs (AEDs) commonly used in juvenile myoclonic epilepsy (JME). Methods People with JME were identified from a large database of individuals with epilepsy, which includes detailed retrospective information on AED use. We assessed secular changes in AED use and calculated rates of response (12‐month seizure freedom) and adverse drug reactions (ADRs) for the five most common AEDs. Retention was modeled with a Cox proportional hazards model. We compared valproate use between males and females. Results We included 305 people with 688 AED trials of valproate, lamotrigine, levetiracetam, carbamazepine, and topiramate. Valproate and carbamazepine were most often prescribed as the first AED. The response rate to valproate was highest among the five AEDs (42.7%), and significantly higher than response rates for lamotrigine, carbamazepine, and topiramate; the difference to the response rate to levetiracetam (37.1%) was not significant. The rates of ADRs were highest for topiramate (45.5%) and valproate (37.5%). Commonest ADRs included weight change, lethargy, and tremor. In the Cox proportional hazards model, later start year (1.10 [1.08‐1.13], P

Summary Objectives A cluster‐randomized trial of home‐based care using primary‐care resources for people with epilepsy has been set up to optimize epilepsy care in resource‐limited communities in low‐ and middle‐income countries. The primary aim is to determine whether treatment adherence to antiepileptic drugs is better with home‐based care or with routine clinic‐based care. The secondary aims are to compare the effects of the two care pathways on seizure control and quality of life. Methods The home‐based intervention comprises epilepsy medication provision, adherence reinforcement, and epilepsy self‐management and stigma management guidance provided by an auxiliary nurse‐midwife equivalent. The experimental group will be compared to a routine clinic‐based care group using a cluster‐randomized design in which the unit of analysis is a cluster of 10 people with epilepsy residing in an area cared for by a single accredited government grass‐roots health care worker. The primary outcome is treatment adherence as measured by monthly tablet counts supplemented by two self‐completed questionnaires. The secondary outcomes include monthly seizure frequency, time to first seizure (in days) after enrollment, proportion of patients experiencing seizure freedom for the duration of the study, and quality of life measured by the “Personal Impact of Epilepsy Scale,” all assessed by an independent study nurse. Results The screening phase and neurologic evaluations and randomizations have been recently completed and follow‐up is underway. Significance The results of the trial are likely to have substantial bearing on the development of governmental policies and strategies to provide coverage and care for patients with epilepsy in resource‐limited countries.

Objectives: Reductions in the peripapillary retinal nerve fiber layer (pRNFL) have been reported in epilepsy, namely in drug-resistant people. Hippocampal sclerosis (HS) is the most frequent cause of drug-resistant epilepsy in tertiary care centers. We aimed to evaluate the likelihood and characteristic of RNFL loss in individuals with epilepsy having HS.Methods: Fifty-five adults diagnosed with unilateral HS (mean age of 25 years; 42 female) by magnetic resonance imaging were included in this observational cross-sectional study, 58 age-matched individuals with epilepsy with no detectable structural brain abnormality were included as non-HS, and 55 people without neurological diseases were included as healthy controls. pRNFL of both eyes was measured by optical coherence tomography (OCT). In each individual disease related information was recorded.Results: Among the 55 individuals with unilateral HS, one (1.82%) and ten (18.18%) had significant or borderline abnormal thinning of the pRNFL of the ipsilateral eye to the HS. The average pRNFL ipsilateral to the side of HS was significantly thinner than people with epilepsy non-HS (p = 0.013) and healthy controls (p = 0.000), especially in the inferior quadrants. Only age was significantly correlated with the average and inferior quadrant pRNFL thickness of the ipsilateral eye to the HS (R = −0.286, p = 0.035; R = −0.353, p = 0.008 respectively).Conclusion: These preliminary findings suggest that retinal abnormalities associated with HS may have a specific pattern. Further studies need to confirm this finding and to unravel the underlying mechanism.

Background The approach taken to support individuals during the coronavirus disease 2019 (COVID-19) pandemic needs to take into account the requirements of people with intellectual disabilities and/or autism, who represent a major vulnerable group, with higher rates of co-occurring health conditions and a greater risk of dying prematurely. To date, little evidence on COVID-related concerns have been produced and no report has provided structured feedback from the point of view of people with intellectual disabilities and/or autism or of their family/carers. Aims To provide systemised evidence-based information of the priority concerns for people with intellectual disabilities and/or autism regarding the COVID-19 pandemic. Method Senior representatives of major UK-based professional and service-user representative organisations with a stake in the care of people with intellectual disabilities and/or autism were contacted to provide a list of concerns across three domains: ‘mental health and challenging behaviour’, ‘physical health and epilepsy’ and ‘social circumstances and support’. The feedback was developed into statements on frequently reported priorities. These statements were then rated independently by expert clinicians. A video-conference meeting to reconcile outliers and to generate a consensus statement list was held. Results Thirty-two organisations were contacted, of which 26 (81%) replied. From the respondent's data, 30 draft consensus statements were generated. Following expert clinician review, there was initially strong consensus for seven statements (23%), increasing to 27 statements (90%) following video conferencing. Conclusions These recommendations highlight the expectations of people with intellectual disabilities and/or autism in the current pandemic. This could support policymakers and professionals’ deliver and evidence person-centred care.

Epilepsy is one of the most serious neurological conditions and has an impact not only on the affected individual but also on the family and, indirectly, on the community. A global approach to the individual must take into account cognitive problems, psychiatric comorbidities and all psychosocial complications that often accompany epilepsy. We discuss psychosocial issues in epilepsy with special focus on the relationship between stigma and psychiatric comorbidities. Social barriers to optimal care and health outcomes for people with epilepsy result in huge disparities, and the public health system needs to invest in awareness programmes to increase public knowledge and reduce stigma in order to minimise such disparities.

Recent publication of the American Academy of Neurology SUDEP guidance highlighted the importance to American clinicians of making people with epilepsy aware of SUDEP risk. It is the first guideline to do this in the United States. It follows precedent set out in the UK by National Institute of Clinical Excellence in 2004. While a significant achievement, the lack of clarity of how to deliver this guidance in an enduring and person-centered manner, raises concerns on how its long-term effectiveness in risk mitigation. Shared decision-making with an emphasis on delivering person-centered communication to foster self-management strategies is increasingly recognized as the ideal model of patient–clinician communication in chronic diseases such as epilepsy. The tension between delivering evidence-based risk information, yet, tailoring it to the individual is complex. It needs to incorporate the potential for change not only in seizure factors but also other health and social factors. Safety advice needs to be dynamic and situation sensitive as opposed to a “one off” discussion. As a significant minority of people with epilepsy have drug-resistant seizures, the importance of keeping the advice contextual at different intervals of the person’s life cannot be overstated as many of them are managed in primary care. We present some exploratory work, which identifies the need to improve communication at a primary care level and to review risks regularly. Regular reviews using a structured risk factor checklist as a screening tool could identify, sooner, people who’s health issues are worsening and justify referrals to specialists.

Sudden unexpected death in epilepsy (SUDEP) represents the most severe degree of the spectrum of epilepsy severity and is the commonest cause of epilepsy-related premature mortality. The precise pathophysiology and the genetic architecture of SUDEP remain elusive. Aiming to elucidate the genetic basis of SUDEP, we analysed rare, protein-changing variants from whole-exome sequences of 18 people who died of SUDEP, 87 living people with epilepsy and 1479 non-epilepsy disease controls. Association analysis revealed a significantly increased genome-wide polygenic burden per individual in the SUDEP cohort when compared to epilepsy (P = 5.7 × 10−3) and non-epilepsy disease controls (P = 1.2 × 10−3). The polygenic burden was driven both by the number of variants per individual, and over-representation of variants likely to be deleterious in the SUDEP cohort. As determined by this study, more than a thousand genes contribute to the observed polygenic burden within the framework of this study. Subsequent gene-based association analysis revealed five possible candidate genes significantly associated with SUDEP or epilepsy, but no one single gene emerges as common to the SUDEP cases. Our findings provide further evidence for a genetic susceptibility to SUDEP, and suggest an extensive polygenic contribution to SUDEP causation. Thus, an overall increased burden of deleterious variants in a highly polygenic background might be important in rendering a given individual more susceptible to SUDEP. Our findings suggest that exome sequencing in people with epilepsy might eventually contribute to generating SUDEP risk estimates, promoting stratified medicine in epilepsy, with the eventual aim of reducing an individual patient's risk of SUDEP.

Throughout the centuries, scientific observers have endeavoured to extend their knowledge of the interrelationships between the brain and its regulatory control of human emotions and behaviour. Since the time of physicians such as Aristotle and Galen and the more recent observations of clinicians and neuropathologists such as Broca, Papez, and McLean, the field of affective neuroscience has matured to become the province of neuroscientists, neuropsychologists, neurologists, and psychiatrists. It is accepted that the prefrontal cortex, amygdala, anterior cingulate cortex, hippocampus, and insula participate in the majority of emotional processes. New imaging technologies and molecular biology discoveries are expanding further the frontiers of knowledge in this arena. The advancements of knowledge on the interplay between the human brain and emotions came about as the legacy of the pioneers mentioned in this field. The aim of this paper is to describe the historical evolution of the scientific understanding of interconnections between the human brain, behaviour, and emotions.

PURPOSE: To assess the perception of epilepsy stigma in different regions of Brazil. METHOD: The Stigma Scale of Epilepsy (SSE) questionnaire was applied to people in different Brazilian urban settings. The survey was performed on individual basis; an interviewer read the questions to the subjects and wrote down the answers. The same procedure was applied to all the subjects and took around 10 minutes. RESULTS: 266 questionnaires were completed in four different towns of Brazil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). The overall stigma score was 49.7 (median). Different scores were obtained in each locality. Vila Velha=42; Curitiba=49; São Paulo=52; Ipatinga=54 (ANOVA [2.262]=3.82; p=0.01). CONCLUSION: This study showed differences in the perception of stigma, which may depend on cultural and regional aspects. The concept of stigma has cultural perspectives, depending on the region and the context where each person lives. The understanding of this aspect of epilepsy is important to promote better de-stigmatization campaigns, considering the cultural and social differences.OBJETIVO: Identificar a percepção do estigma na epilepsia em diferentes regiões do Brasil. MÉTODO: A Escala de Estigma na Epilepsia foi aplicada em 266 pessoas de quatro diferentes cidades do Brasil (Curitiba, São Paulo, Vila Velha e Ipatinga). Em todas as situações, as pessoas foram entrevistadas individualmente, sendo que as questões eram lidas para os sujeitos. As condições de aplicação foram as mesmas nas cidades e a aplicação durou aproximadamente 10 minutos. RESULTADOS: Foram aplicados 266 questionários em três diferentes cidades do Brasil (Curitiba=83; São Paulo=47; Vila Velha=79; Ipatinga=57). A média do escore geral da EEE foi 49,7. Na avaliação das quatro cidades separadamente, houve diferença significativa entre elas: Vila Velha=42; Curitiba=49; São Paulo=52 e Ipatinga=54 (ANOVA [2,262]=3,82; p=0,01). CONCLUSÃO: Este estudo mostrou diferenças na percepção do estigma, de acordo com as diferenças culturais e regionais. Neste contexto, podemos falar de uma perspectiva cultural para o conceito de estigma, sendo influenciado pela região e pelo contexto no qual a pessoa está inserida. O entendimento deste processo do estigma é importante para se propor campanhas efetivas de intervenção no estigma da epilepsia, considerando as diferenças sociais e culturais.

PURPOSE: To evaluate the information that university students have on epilepsy and to compare the differences in attitudes and perception among groups with different levels of information. METHODS: A questionnaire with 13 questions regarding knowledge, attitudes and perception about epilepsy was completed by first, third and sixth year medical students and to students from Arts and Science courses. RESULTS: First year medical students gave inadequate answers, especially with regard to information about epilepsy and actions to take during seizures. Answers of third and sixth year medical students were more adequate. Arts and Science students gave the poorest responses in relation to specialist information and attitudes regarding epilepsy. DISCUSSION: This study suggests that there is an inverse relationship between knowledge and stigma on epilepsy. Nevertheless, the best results did not reflect an ideal situation, revealing an urgent need for an improved level of overall health education programs. This can be achieved by implementing educational policies, training programs and the universal inclusion of these subjects in the global educational program.OBJETIVO: Avaliar os conhecimentos de estudantes universitários sobre epilepsia e verificar se há diferenças entre atitudes e percepção em grupos que são submetidos a diferentes graus de informação. MÉTODO: Foram aplicados questionários contendo 13 questões sobre conhecimentos, percepção e atitudes em epilepsia em alunos da Unicamp, divididos em: primeiro, terceiro e sexto anos de medicina, e alunos de cursos da área de exatas e humanas. RESULTADOS: os alunos do primeiro ano de medicina apresentaram muitas respostas inadequadas, principalmente às relacionadas ao conhecimento sobre epilepsia e atitudes durante a crise. Os alunos do terceiro e do sexto ano apresentaram respostas mais adequadas para percepção e atitudes. Os alunos de ciências exatas e humanas apresentaram os piores níveis de resposta para os aspectos de conhecimento técnico e atitudes. DISCUSSÃO: O estudo mostrou que existe uma relação inversa entre conhecimento e estigma. Entretanto, a melhora destes índices não reflete uma condição ideal, existindo a necessidade imediata de melhorar o nível de educação sobre saúde em geral, o que pode ser feito mediante a implantação de políticas educacionais, programas de capacitação e até mesmo da inclusão destes assuntos transversalmente em toda a trajetória de ensino.

PURPOSE: To assess the outcome of patients with epilepsy treated at primary care health units under the framework of the demonstration project on epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign Against Epilepsy. METHOD: We assessed the outcome of patients treated at four primary health units. The staff of the health units underwent information training in epilepsy. The outcome assessment was based on: 1) reduction of seizure frequency, 2) subjective perception from the patient’s and the physician’s point of view, 3) reduction of absenteeism, 4) social integration (school and work), and 5) sense of independence. RESULTS: A total of 181 patients (93 women - 51%) with a mean age of 38 (range from 2 to 86) years were studied. The mean follow-up was 26 months (range from 1 to 38 months, 11 patients had follow-up of less than 12 months). Seizure frequency was assessed based on a score system, ranging from 0 (no seizure in the previous 24 months) to 7 (>10 seizure/day). The baseline median seizure-frequency score was 3 (one to three seizures per month). At the end of the study the median seizure-frequency score was 1 (one to three seizures per year). The patients’ and relatives’ opinions were that in the majority (59%) the health status had improved a lot, some (19%) had improved a little, 20% experienced no change and in 2% the health status was worse. With regard to absenteeism, social integration and sense of independence, there were some modest improvements only. DISCUSSION: The development of a model of epilepsy treatment at primary health level based on the existing health system, with strategic measures centred on the health care providers and the community, has proved to be effective providing important reductions in seizure frequency, as well as in general well being. This model can be applied nationwide, as the key elements already exist provided that strategic measures are put forward in accordance with local health providers and managers.OBJETIVO: Avaliar o resultado do tratamento de pacientes com epilepsia na atenção básica sob o modelo proposto pelo Projeto Demonstrativo no Brasil, como parte da Campanha Global Contra a Epilepsia da WHO/ILAE/IBE. MÉTODO: Avaliamos o resultado do tratamento nos pacientes acompanhados em quatro unidades básicas de saúde. As equipes de saúde fizeram um treinamento padrão. O resultado do tratamento foi baseado em cinco aspectos: 1) redução da freqüência das crises, 2) percepção subjetiva dos pacientes e dos médicos, 3) redução de absenteísmo, 4) integração social (escola, trabalho), e 5) senso de independência. RESULTADOS: Um total de 181 pacientes (93 mulheres - 51%), com uma média de 38 anos (variando de 2 a 86 anos) entraram nesta análise. O tempo médio de seguimento foi de 26 meses (variou de 1 a 38 meses, 11 pacientes tinham seguimento menos de 12 meses). A freqüência das crises foi categorizada variando de 0 (sem nenhuma crise nos últimos 24 meses) a 7 (>10 crises/dia). O escore mediano da freqüência de crises no começo era de 3 (uma a três crises por mês). O escore mediano da freqüência de crises no final era de 1 (uma a três crises por ano). A opinião dos pacientes e familiares é que a maioria (106 casos) houve uma melhora importante na saúde, 34 tiveram pouca melhora, 37 não tiveram mudanças e em quatro houve piora. Em relação ao absenteísmo, integração social e senso de independência houve pouca melhora. DISCUSSÃO: O modelo desenvolvido de tratamento de epilepsia na atenção primária com base na estrutura de saúde existente, com estratégias centradas nos profissionais de saúde e na comunidade, provou ser efetivo com redução importante na freqüência das crises bem como na melhora em geral da saúde. Esse modelo pode ser aplicado em âmbito nacional, pois os elementos chaves já existem, desde que essas estratégias sejam pactuadas com os organismos locais de saúde.

PURPOSE: To evaluate the knowledge, attitudes and perceptions of epilepsy in primary care system health professionals prior to and after an educational intervention. METHODS: Educational interventions were delivered to three groups of people with an interest in epilepsy: 1. Information courses for physicians (241 subjects); 2. Social re-integration course for health professionals and community leaders (631 subjects); 3. "Training the Trainers" Course for physicians (11 subjects). The whole program is flexible and can be tailored for local or regional needs. For the evaluation of this process, health professionals completed a quantitative and qualitative questionnaire to assess their knowledge, attitudes and perception (KAP) of epilepsy prior to the training (pre-test) and 6 months after it (post-test). RESULTS: Comparison of knowledge scores prior to (mean=55.8, standard deviation=14.0) and after (mean=71.5, standard deviation=12.0) the intervention showed that physicians had improved knowledge after the training (t-test=7.8, pOBJETIVO: Avaliar conhecimentos, atitudes e percepção sobre epilepsia de profissionais da saúde do sistema de atenção básica antes e depois de curso de capacitação. MÉTODO: Cursos de capacitação foram realizados em três grupos de profissionais de saúde: 1. cursos de capacitação para médicos (241 sujeitos); 2. cursos de inserção social para agentes comunitários de saúde (631 sujeitos); 3. cursos de replicadores para médicos (11 sujeitos). O programa de capacitação foi adaptado para as condições de cada local. Para avaliar o processo, foram aplicados questionários a respeito do seu conhecimento, sua atitude e percepção perante à epilepsia (KAP) antes dos cursos (pré-teste) e após a intervenção (pós-teste). RESULTADOS: A comparação feita a respeito do conhecimento com médicos mostrou que os mesmos melhoram seu conhecimento com os cursos (pré-teste: nota média=55.8; DP=14,0) vs. pós-teste: nota média=71,5; DP=12,0; t-test=7,8; p

PURPOSE: To provide a situation assessment of services for people with epilepsy in the context of primary health care, as part of the Demonstration Project on Epilepsy in Brazil, part of the WHO/ILAE/IBE Global Campaign 'Epilepsy out of the shadows'. METHODS: We performed a door-to-door epidemiological survey in three areas to assess the prevalence of epilepsy and its treatment gap. We surveyed a sample of 598 primary health care workers from different regions of Brazil to assess their perceptions of the management of people with epilepsy in the primary care setting. RESULTS: The lifetime prevalence of epilepsy was 9.2/1,000 people [95% CI 8.4-10.0] and the estimated prevalence of active epilepsy was 5.4/1,000 people. Thirty-eight percent of patients with active epilepsy were on inadequate treatment, including 19% who were taking no medication. The survey of health workers showed that they estimated that 60% of patients under their care were seizure-free. They estimated that 55% of patients were on monotherapy and that 59% had been referred to neurologists. The estimated mean percentage of patients who were working or studying was 56%. Most of the physicians (73%) did not feel confident in managing people with epilepsy. DISCUSSION: The epidemiological survey in the areas of the Demonstration Project showed that the prevalence of epilepsy is similar to that in other resource-poor countries, and that the treatment gap is high. One factor contributing to the treatment gap is inadequacy of health care delivery. The situation could readily be improved in Brazil, as the primary health care system has the key elements required for epilepsy management. To make this effective and efficient requires: i) an established referral network, ii) continuous provision of AEDs, iii) close monitoring of epilepsy management via the notification system (Sistema de Informação da Atenção Básica - SIAB) and iv) continuous education of health professionals. The educational program should be broad spectrum and include not only medical management, but also psycho-social aspects of epilepsy.OBJETIVO: Avaliar a situação da assistência à epilepsia no contexto da atenção primária sob o Projeto Demonstrativo em epilepsia no Brasil, parte da Campanha Global Epilepsia Fora das Sombras da WHO/ILAE/IBE. MÉTODO: Fizemos um levantamento epidemiológico para definir a prevalência e lacuna de tratamento em epilepsia. Avaliamos a percepção de 598 profissionais de saúde da atenção básica de diferentes regiões do Brasil sobre epilepsia e seu manejo na rede básica de saúde. RESULTADOS: A prevalência acumulada de epilepsia foi de 9,2/1000 pessoas (95%IC= 8,4-10) e a prevalência estimada de epilepsia ativa foi de 5,4/1000 pessoas. Trinta e oito porcento dos pacientes com epilepsia ativa estavam sendo tratados inadequadamente, incluindo 19% que estavam sem medicação. A enquete com os profissionais de saúde mostrou que a média estimada de pacientes livre de crises sob os cuidados dos mesmos era de 60%. A média estimada de porcentagem em monoterapia era de 55%. A média estimada de porcentagem de referência para neurologistas era de 59%. A média estimada de porcentagem de pacientes que estavam trabalhando ou estudando era de 56%. A maioria dos médicos não se sente confiante em atender uma pessoa com epilepsia. DISCUSSÃO: A análise situacional da Fase I - estudo epidemiológico nas áreas de interesse do PD mostrou que a prevalência da epilepsia é similar a outros países em desenvolvimento e a lacuna de tratamento é grande. Um dos fatores importantes para a lacuna de tratamento é a falta de adequação à assistência na atenção básica. Essa situação pode ser revertida no Brasil, pois os elementos chaves existem na rede básica para o manejo de pessoas com epilepsia. Entretanto, para torna efetivo e eficiente é preciso i) estabelecimento de um sistema de referência e contra-referência, ii) fornecimento contínuo de medicação anti-epiléptica, iii) monitorização de manejo de pessoas com epilepsia através de sistema de notificação (SIAB - Sistema de Informação da Atenção Básica), e iv) educação continuada de profissionais de saúde. O programa educacional deve ser amplo incluindo não somente manejo médico, mas também aspectos psico-sociais.

PURPOSE: To evaluate the knowledge, attitude and perception of medical students prior to and after a training course about epilepsy. METHODS: We used a KAP questionnaire with sixty-one questions which assesses knowledge, attitude and practice of epilepsy. Questionnaires were completed by 185 medical students, before and after epilepsy training. We compared the answers to see whether the lecture had changed the knowledge, attitude and practice in epilepsy. RESULTS: One hundred and six students completed the questionnaire before an eight hour course on epilepsy and 79 students completed the questionnaire one year after the course. Comparison of the knowledge scores prior to (mean=53.9, standard deviation=11.4) and after the course (mean=63.8, standard deviation=11.9) showed that students had improved knowledge after the course (t-test=5.6, pOBJETIVO: Avaliar conhecimentos, atitudes e percepção sobre epilepsia em estudantes de medicina antes e depois de curso de capacitação. MÉTODO: Foi utilizado o questionário KAP da Campanha Global "Epilepsia fora das sombras", liderada pela OMS, ILAE e IBE. Este questionário avalia conhecimento, atitude e percepção sobre epilepsia em 61 questões. Foi aplicado este questionário em 185 estudantes de medicina, antes e depois de cursos de capacitação sobre epilepsia. As questões foram comparadas para analisar as mudanças obtidas com o treinamento. RESULTADOS: Cento e seis estudantes de medicina responderam ao questionário antes do curso de capacitação e 79 estudantes responderam após um ano do curso. A comparação feita a respeito do conhecimento com estes estudantes mostrou que os mesmos melhoram seu conhecimento com os cursos (pré-teste: nota média=53,9; DP=11,4 vs. pós-teste: nota média=63,8; DP=11,9; t-test=5,6; p

PURPOSE: To evaluate whether an inappropriate attitude towards a person having an epileptic seizure contributes to the stigma found in society and whether an appropriate attitude helps to diminish it in the short term; to perform a long term investigation about information remembered and stigma perception after an educational lecture. METHOD: This study was performed in two steps: Step 1. Students of first year of high school of two schools in Campinas completed a questionnaire including the Stigma Scale of Epilepsy following a seizure demonstration. They were divided into three groups: a) one group had a demonstration of proper attitudes towards someone having an epileptic seizure; b) one group was shown incorrect procedures; c) control group. After the completion of the questionnaire, an educational lecture about epilepsy was given. Step 2: six months later, the questionnaire was re-administered. RESULTS: The comparison between the four groups (step 1 and step 2) show a significant difference (Anova (3,339)=2.77; p=0.042). Pairwise comparison using Fisher's Least-Significant-Difference Test showed a significant difference between the group shown incorrect procedures (step 1) versus step 2, and the control group (step 1) versus step 2, but no difference between the group shown correct procedures (step 1) versus step 2. DISCUSSION: Exhibiting proper attitudes towards a person experiencing an epileptic seizure may cause significant differences among the subjects’ degrees of stigma towards people with epilepsy. It is therefore fundamental that there should be de-stigmatization campaigns provided, to correct information and provide appropriate education.OBJETIVO: Investigar se atitudes errôneas tomadas durante uma crise epiléptica contribuem para o estigma na sociedade e, se a conduta de seguir atitudes corretas ajuda a diminuí-lo a curto prazo e se a participação em palestra informativa também contribui para a diminuição do estigma a longo prazo. MÉTODO: O trabalho foi realizado em duas etapas: 1. Foi aplicada a Escala de Estigma na Epilepsia (EEE), acrescida de algumas perguntas gerais sobre epilepsia, em alunos do primeiro ano do Ensino Médio de duas escolas (pública e particular) em Campinas. Os sujeitos foram divididos em 3 grupos, sendo: a) grupo que presenciou atitudes corretas durante a crise epiléptica; b) grupo que presenciou atitudes errôneas durante a mesma; c) grupo controle que só respondeu ao questionário, e depois, todos foram reunidos para palestra educativa. 2. Depois de seis meses, o mesmo questionário foi aplicado nos sujeitos que participaram da palestra educativa da primeira etapa. RESULTADOS: A comparação entre os quatro grupos (passo 1 e 2) mostrou diferença significativa [(ANOVA (3,339)=2,77; p=0,042). Análise estatística (Fisher) mostrou diferenças significativas entre o grupo que presenciou atitudes incorretas (etapa 1) e a etapa 2, entre o grupo controle (etapa 1) e a etapa 2, e não encontrou diferenças entre o grupo que presenciou atitudes corretas (etapa 1) e a etapa 2. DISCUSSÃO: Os sujeitos expostos a condutas adequadas durante uma crise epiléptica, bem como a informações corretas sobre epilepsia demonstraram menor percepção de estigma. Com isso, concluímos que intervenções educacionais devem ser realizadas para se tentar mudanças a longo prazo.

PURPOSE: To identify in a town of Brazil the knowledge, attitude and perception of epilepsy in teachers of elementary schools and to compare these before and after a training exercise. METHODS: Teachers of nine public schools of Barão Geraldo, Campinas, Brazil completed a questionnaire. Two researchers had meetings with teachers, presenting the Global Campaign "Epilepsy out of the shadows", when the questionnaire was first completed by all attendees. Twenty teachers of these schools were motivated to attend a training course entitled "Epilepsy and Health" as part of their continuous education programme. Two years later the same questionnaire was again completed (post-test) by these 20 teachers. RESULTS: 100 teachers originally completed the questionnaire (97 women, mean age 42 years, 64 married). Forty-three percent of teachers said that they had enough knowledge regarding epilepsy and 20% said that they had poor knowledge about the condition. Regarding the IQ of children with epilepsy, 45% of teachers believed that they had average IQ, 18% above average, six percent under average and 29% did not know. Teachers believed that children with epilepsy have a higher possibility of acquiring mental disease in the future (51%); that epilepsy is a disease (68%); that epilepsy is contagious (1%); epilepsy is treatable (90%). After the course, the teachers’ beliefs seem to have improved. DISCUSSION: This work with elementary school teachers identified difficulties related to epilepsy which, if addressed, may help promote better quality of life of people with epilepsy in the community and help to decrease stigma attached to the condition. Better informed teachers are likely to have a more positive attitude and this will be passed to others. Educational campaigns about epilepsy amongst teachers should be encouraged as this may improve the management of epilepsy, by helping to develop a well informed and tolerant community.OBJETIVO: Identificar atitudes e percepção dos professores do ensino fundamental a respeito da epilepsia, antes e depois de um curso específico sobre o tema. MÉTODO: Participaram da pesquisa professores de nove escolas da rede pública do ensino fundamental de Barão Geraldo, distrito de Campinas, SP. Dois pesquisadores reuniram-se com os professores e apresentaram a Campanha Global "Epilepsia fora das sombras", momento também em que os questionários foram aplicados. Vinte professores ficaram motivados para fazer o curso de extensão "Temas transversais: epilepsia e saúde". Após este curso, os questionários foram re-aplicados. RESULTADOS: Foram aplicados 100 questionários em professores das nove escolas, sendo que: noventa e sete professores eram do sexo feminino, idade média de 42 (D.P. 22 a 63) e 64 estavam casados. Quarenta e três professores declararam possuir conhecimento sobre epilepsia abaixo da média e 20, disseram possuir um pobre conhecimento sobre a condição. No que diz respeito à idéias sobre epilepsia, os professores acham que: as crianças com epilepsia tem QI igual (45%), na média (18%), abaixo da média (6%) e não sabem opinar (29%); crianças com epilepsia têm maior chance de terem doença mental no futuro (51%); a epilepsia é uma doença (68%); a epilepsia é contagiosa (1%); a epilepsia é tratável (90%). Após o curso, crenças e mitos sobre epilepsia dos professores mostraram diferenças significativas. DISCUSSÃO: Idéias errôneas sobre epilepsia podem ser mudadas através de cursos educacionais sobre epilepsia. Este trabalho, realizado com professores do ensino fundamental, visou a identificação das dificuldades relacionadas à epilepsia para promover a redução do estigma. É importante que professores sejam melhor instruídos sobre a epilepsia para consequentemente, ter atitudes mais positivas em relação às crianças com epilepsia. Acreditamos que professores mais capacitados melhoram a maneira de lidar e de se relacionar com crianças com epilepsia, para a construção de uma comunidade bem informada e mais tolerante para lidar com as diferenças.

PURPOSE: To validate a Stigma Scale of Epilepsy (SSE). METHODS: The SSE was completed by 40 adult with epilepsy attending an Outpatient Epilepsy Clinic at the University Hospital of UNICAMP, and by 40 people from the community. People were interviewed on an individual basis; a psychologist read the questions to the subjects who wrote the answers in a sheet. The procedure was the same for all the subjects and completion took around ten minutes. RESULTS: The SSE has 24 items. The internal consistency of the SSE showed alpha Cronbach’s coefficient 0.88 for the patients with epilepsy and 0.81 for the community. The overall mean scores of the Stigma Scale of Epilepsy formula were: 46 (SD=18.22) for patients and 49 (SD=13.25) for the community where a score of 0 would suggest no stigma, and 100 maximum stigma. DISCUSSION: The SSE has satisfactory content validity and high internal consistency. It allows the quantification of the perception of stigma by patients and people from community; this can then be used for interventional studies, such as mass media campaign in minimizing the negative facets of stigma.OBJETIVO: Validar a Escala de Estigma na Epilepsia (EEE). MÉTODO: A EEE foi aplicada em 40 pacientes adultos com o diagnóstico de Epilepsia do Ambulatório de Epilepsia do HC/Unicamp e em 40 pessoas da comunidade em geral. Os sujeitos foram entrevistados individualmente pelas psicólogas, que foram lendo as questões e anotando as respostas na escala. As condições de aplicação foram as mesmas e a aplicação durou cerca de 10 minutos. RESULTADOS: A EEE possui 24 itens. A consistência interna da EEE mostrou alfa de Cronbach, de 0,88 para os pacientes com epilepsia e 0,81 para a comunidade. As médias do valor geral de estigma obtido com a fórmula da EEE foram: 46 (DP=18,22) para os pacientes e 49 (DP=13,25) para a comunidade. DISCUSSÃO: A EEE possui uma satisfatória validade e alta consistência interna. Isso permite uma quantificação da percepção de estigma da epilepsia na comunidade em geral, que pode ser utilizada para estudos interventivos, como campanhas na mídia, para minimizar as facetas negativas do estigma na sociedade.

Epilepsy affects between 5 and 10 people in a 1,000 and carries considerable morbidity and premature mortality. The complex inheritance pattern of a lowered seizure threshold is not fully understood but is likely to be polygenic. In the majority of people with epilepsy, we do not understand the pathophysiology, how a seizure is triggered, and how it can be prevented. In the centennial year of the discovery of the antiepileptic properties of phenobarbital, we have over 20 antiepileptic drugs; however, none have dramatically changed the long-term prognosis of the condition. The cascade of events triggering epilepsy is likely to vary greatly among individuals. The hope for the future is a shift of paradigm away from the symptomatic approach that currently exists. Indeed, once epileptogenesis is fully understood, treatment can be targeted at specific mechanisms, and then we will have truly disease-modifying therapies.

Epilepsy affects between 5 and 10 people in a 1,000 and carries considerable morbidity and premature mortality. The complex inheritance pattern of a lowered seizure threshold is not fully understood but is likely to be polygenic. In the majority of people with epilepsy, we do not understand the pathophysiology, how a seizure is triggered, and how it can be prevented. In the centennial year of the discovery of the antiepileptic properties of phenobarbital, we have over 20 antiepileptic drugs; however, none have dramatically changed the long-term prognosis of the condition. The cascade of events triggering epilepsy is likely to vary greatly among individuals. The hope for the future is a shift of paradigm away from the symptomatic approach that currently exists. Indeed, once epileptogenesis is fully understood, treatment can be targeted at specific mechanisms, and then we will have truly disease-modifying therapies.A epilepsia afeta entre 5 e 10 em cada 1.000 pessoas, e está associada a comorbidades e mortalidade prematura. O complexo padrão de herança, possivelmente poligênico, para baixo limiar convulsivo, ainda não é bem compreendido. Na maioria das pessoas com epilepsia ainda não entendemos a sua fisiopatologia, como as crises epilépticas são desencadeadas ou como podem ser prevenidas. No centenário da descoberta das propriedades antiepilépticas do fenobarbital, temos mais de 20 drogas disponíveis para tratamento de epilepsia; contudo, nenhum fármaco mudou dramaticamente o prognóstico desta condição, em longo prazo. A cascata de eventos que desencadeia a epilepsia, provavelmente, varia muito de indivíduo para indivíduo. A esperança para o futuro é a mudança do atual paradigma da abordagem sintomática. Uma vez que a epileptogênese seja melhor compreendida, o tratamento poderá ser direcionado aos seus mecanismos específicos e então poderemos dispor de tratamentos capazes de modificar a história natural da doença.

PURPOSE: To establish a social network of epilepsy lay organization in Brazil to provide advocacy for people with epilepsy and eventually form a powerful National Epilepsy movement. METHOD: We actively searched for any associations, support groups or organizations related to epilepsy in the country by personal contacts, internet search and by telephone search. Contact was then established with any entity found. RESULTS: The first meeting was held in Campinas in March 2003, and was attended by 270 people, including many people with epilepsy, members of all eleven epilepsy associations found, health professionals and representatives of the Brazilian chapters of IBE and ILAE and the Brazilian Ministry of Health. This first meeting resulted in a National Movement expressed every year through the National Week of Epilepsy and National Meeting of Lay Associations. DISCUSSION: This strategy, developed by ASPE, was simple and effective, and in a very short time a national movement was active. These actions could be reproduced in any country developing a campaign against epilepsy. It is important to consider that this is a process of empowerment, thus people with epilepsy need to take actions into their own hands and to be active participants.OBJETIVO: Estabelecer uma rede social na epilepsia, através de encontros de associações de pacientes para promover um melhor atendimento bio-psico-social aos pacientes e com isso, formar um Movimento Nacional de Epilepsia. MÉTODO: Foram pesquisadas as associações de epilepsia e grupos de apoio existentes em nosso país através de contatos pessoais ou telefônicos e pesquisas pela internet. RESULTADOS: O primeiro encontro aconteceu em Campinas em março de 2003 e contou com a participação de 270 pessoas, incluindo pessoas com epilepsia, membros de 11 associações de epilepsia, profissionais da saúde, representantes dos capítulos brasileiros da ILAE e da IBE e o Ministro da Saúde. Este primeiro encontro resultou em um Movimento Nacional, expresso anualmente através da Semana Nacional de Epilepsia e do Encontro Nacional de Associações e Grupos de Pacientes com Epilepsia. DISCUSSÃO: Esta estratégia, desenvolvida pela ASPE, é simples e efetiva, mostrando que em um curto período de tempo, o movimento nacional ficou ativo. Estas ações podem ser reproduzidas em qualquer lugar, dentro da campanha "Epilepsia fora das sombras". É importante enfatizar que isso é um processo de fortalecimento, de modo que as pessoas com epilepsia precisam tomar suas próprias decisões, tendo o controle da situação para enfim, serem participantes ativos de todo o processo.

ABSTRACT Neurocysticercosis is one of the most common risk factors for epilepsy but its association with drug-resistant epilepsy remains uncertain. Conjectures of an association with drug-resistant epilepsy have been fueled by reports of an association between calcific neurocysticercosis lesions (CNL) and hippocampal sclerosis (HS) from specialized epilepsy centers in Taenia solium-endemic regions. The debate arising from these reports is whether the association is causal. Evidence for the association is not high quality but sufficiently persuasive to merit further investigation with longitudinal imaging studies in population-based samples from geographically-diverse regions. The other controversial point is the choice of a surgical approach for drug-resistant epilepsy associated with CNL-HS. Three approaches have been described: standard anteromesial temporal lobectomy, lesionectomy involving a CNL alone and lesionectomy with anteromesial temporal lobectomy (for dual pathology); reports of the latter two approaches are limited. Presurgical evaluation should consider possibilities of delineating the epileptogenic zone/s in accordance with all three approaches.