Burden Of Epilepsy Research Articles

Review of epilepsy care in the Democratic Republic of the Congo.

Epilepsy imposes a substantial burden on the Democratic Republic of Congo (DRC). These challenges encompass the lack of comprehensive disease surveillance, an unresolved understanding of its pathophysiology, economic barriers limiting access to essential care, the absence of epilepsy surgical capabilities, and deeply ingrained societal stigmas. Notably, the national prevalence of epilepsy remains undetermined, with research primarily concentrating on infectious factors like Onchocerca volvulus, leaving other potential causes underexplored. Most patients lack insurance, incurring out-of-pocket expenses that often lead them to opt for traditional medicine rather than clinical care. Social stigma, perpetuated by common misconceptions, intensifies the social isolation experienced by individuals living with epilepsy. Additionally, surgical interventions are unavailable, and the accessibility of anti-seizure medications and healthcare infrastructure remains inadequate. Effectively tackling these interrelated challenges requires a multifaceted approach, including conducting research into region-specific factors contributing to epilepsy, increasing healthcare funding, subsidizing the costs of treatment, deploying mobile tools for extensive screening, launching awareness campaigns to dispel myths and reduce stigma, and promoting collaborations between traditional healers and medical practitioners to enhance local understanding and epilepsy management. Despite the difficulties, significant progress can be achieved through sustained and compassionate efforts to understand and eliminate the barriers faced by epilepsy patients in the region. This review outlines essential steps for alleviating the epilepsy burden in the DRC. PLAIN LANGUAGE SUMMARY: There are not enough resources to treat epilepsy in the DRC. PWEs struggle with stigma and the lack of money. Many of them still use traditional medicine for treatment and hold wrong beliefs about epilepsy. That is why there is a need for more resources to make the lives of PWEs better in the DRC.

The impact of damaging epilepsy and cardiac genetic variant burden in sudden death in the young

BackgroundSudden unexpected death in children is a tragic event. Understanding the genetics of sudden death in the young (SDY) enables family counseling and cascade screening. The objective of this study was to characterize genetic variation in an SDY cohort using whole genome sequencing.MethodsThe SDY Case Registry is a National Institutes of Health/Centers for Disease Control and Prevention surveillance effort to discern the prevalence, causes, and risk factors for SDY. The SDY Case Registry prospectively collected clinical data and DNA biospecimens from SDY cases < 20 years of age. SDY cases were collected from medical examiner and coroner offices spanning 13 US jurisdictions from 2015 to 2019. The cohort included 211 children (median age 0.33 year; range 0–20 years), determined to have died suddenly and unexpectedly and from whom DNA biospecimens for DNA extractions and next-of-kin consent were ascertained. A control cohort consisted of 211 randomly sampled, sex- and ancestry-matched individuals from the 1000 Genomes Project. Genetic variation was evaluated in epilepsy, cardiomyopathy, and arrhythmia genes in the SDY and control cohorts. American College of Medical Genetics/Genomics guidelines were used to classify variants as pathogenic or likely pathogenic. Additionally, pathogenic and likely pathogenic genetic variation was identified using a Bayesian-based artificial intelligence (AI) tool.ResultsThe SDY cohort was 43% European, 29% African, 3% Asian, 16% Hispanic, and 9% with mixed ancestries and 39% female. Six percent of the cohort was found to harbor a pathogenic or likely pathogenic genetic variant in an epilepsy, cardiomyopathy, or arrhythmia gene. The genomes of SDY cases, but not controls, were enriched for rare, potentially damaging variants in epilepsy, cardiomyopathy, and arrhythmia-related genes. A greater number of rare epilepsy genetic variants correlated with younger age at death.ConclusionsWhile damaging cardiomyopathy and arrhythmia genes are recognized contributors to SDY, we also observed an enrichment in epilepsy-related genes in the SDY cohort and a correlation between rare epilepsy variation and younger age at death. These findings emphasize the importance of considering epilepsy genes when evaluating SDY.

Global, regional, and national time trends in the burden of epilepsy, 1990-2019: an age-period-cohort analysis for the global burden of disease 2019 study.

Epilepsy is a non-communicable chronic brain disease that affects all age groups. There are approximately 50 million epilepsy patients worldwide, which is one of the most common neurological disorder. This study reports the time trends in the burden of epilepsy from 1999 to 2019. We evaluated the disease burden and its temporal trends of epilepsy using the prevalence and years lived with disability (YLDs), which was estimated based on the Global Burden of Disease (GBD) 2019 study. The age-period-cohort (APC) model was used to estimate the temporal trends of the epilepsy prevalence and YLDs rates, and to analyze the relative risks of age, periods and queues (age/period/queue effects). In the past 30 years, the global age-standardized prevalence rate and age-standardized rate has increased by 29.61% and 27.02%, respectively. Globally, the APC model estimated the net drift of prevalence and YLDs were 0.88% (95% CI: 0.83-0.93) and 0.80% (95% CI: 0.75-0.85) per year. Among 204 countries and territories, the YLDs in 146 and prevalence 164 showed an increasing trend. And the risk of YLDs and prevalence increases with age, with the lowest risk among 0-4 years old and the highest risk among 75-79 years old. Unfavorable increasing period and cohort risks of YLDs and prevalence were observed. Over the past 30 years, the YLDs and prevalence of epilepsy have gradually increased globally and unfavorable increasing period and cohort risks were observed. Emphasizing epilepsy prevention, strengthening epilepsy health education, optimizing older adults epilepsy diagnosis and treatment plans, and actively promoting epilepsy diagnosis and treatment plans can effectively reduce new cases of epilepsy and related disabilities.

Burden of narcolepsy in Japan: A health claims database study evaluating direct medical costs and comorbidities

ObjectiveThis study aimed to determine the burden of narcolepsy in terms of direct medical costs and comorbidities and compare it with the respective burden of schizophrenia, epilepsy, and ulcerative colitis as controls. MethodsPatients diagnosed with narcolepsy (at least once based on the International Statistical Classification of Diseases and Related Health Problems, 10th Revision, code G47.4) between April 2017 and March 2022 were identified on the health insurance claims database compiled by JMDC Inc. Patients with schizophrenia (F20), epilepsy (G40), and ulcerative colitis (K51) were matched as controls. Direct medical costs (including inpatient, outpatient, and medication costs) and comorbidities were analyzed. ResultsWe identified 4,594 patients with narcolepsy (≥18 years), 18,376 with schizophrenia, 18,376 with epilepsy, and 4,594 with ulcerative colitis. The total annual direct medical cost per person with narcolepsy was 349,188 JPY. The cost for narcolepsy was less than that for schizophrenia, epilepsy, and ulcerative colitis. Several comorbidities, such as sleep apnea, attention deficit hyperactivity disorder (ADHD), and obesity were more prevalent in the narcolepsy group. ConclusionsThe total direct cost for narcolepsy was approximately three times higher than the national medical expense for people aged 15–44 years (122,000 JPY in 2020), but lower than the total cost for all control diseases. The patients with narcolepsy were also likely to have comorbidities that affected their burden. These findings can contribute to future discussions on medical expense assistance programs for patients with narcolepsy.

Very high epilepsy prevalence in rural Southern Rwanda: The underestimated burden of epilepsy in sub-Saharan Africa.

Up to 85% of people living with epilepsy (PwE) reside in low-and middle-income countries. In sub-Saharan Africa, the lifetime prevalence of epilepsy is 16 per 1000 persons. In Northern rural Rwanda, a 47.7 per 1000 prevalence has been reported. As variations in prevalence across geographical areas have been observed, we studied the prevalence in Southern rural Rwanda using the same robust methodology as applied in the North. We conducted a three-stage, cross-sectional, door-to-door survey in two rural villages in Southern Rwanda from June 2022 to April 2023. First, trained enumerators administered the validated Limoges questionnaire for epilepsy screening. Second, neurologists examined the persons who had screened positively to confirm the epilepsy diagnosis. Third, cases with an inconclusive assessment were separately reexamined by two neurologists to reevaluate the diagnosis. Enumerators screened 1745 persons (54.4% female, mean age: 24 ± 19.3 years), of whom 304 (17.4%) screened positive. Epilepsy diagnosis was confirmed in 133 (52.6% female, mean age: 30 ± 18.2 years) and active epilepsy in 130 persons. Lifetime epilepsy prevalence was 76.2 per 1000 (95% CI: 64.2-89.7‰). The highest age-specific rate occurred in the 29-49 age group. No gender-specific differences were noted. In 22.6% of the PwE, only non-convulsive seizures occurred. The treatment gap was 92.2%, including a diagnosis gap of 79.4%. We demonstrated a very high epilepsy prevalence in Southern rural Rwanda, with over 20% of cases having only non-convulsive seizures, which are often underdiagnosed in rural Africa. In line with previous Rwandan reports, we reiterate the high burden of the disease in the country. Geographic variation in prevalence throughout Africa may result from differences in risk and aetiological factors. Case-control studies are underway to understand such differences and propose adapted health policies for epilepsy prevention.

The burden of epilepsy in the People's Republic of China from 1990 to 2019: epidemiological trends and comparison with the global burden of epilepsy.

Epilepsy is associated with a significant global burden of disease, affecting over 50 million people worldwide. The specific aim of this study is to compare the burden of epilepsy in the People's Republic of China (PRC) with the global burden, and to analyze the epidemiological trends of epilepsy, the relationship between the burden of epilepsy and social demographic index (SDI), and the relative contributions of epidemiological factors. This is a retrospective population-based study, data were obtained from the Global Burden of Disease (GBD) study in 2019. We employed Joinpoint software and the age-period-cohort (APC) model to analyze epilepsy's epidemiological trends. Health inequality analysis was conducted to investigate the impact of SDI on epilepsy burden. Decomposition analysis was performed to examine the relative contributions of age, population, and epidemiological changes to epilepsy. Between 1990 and 2019, the incidence rate in the PRC increased by 45%, significantly surpassing the global incidence of epilepsy. However, Disability-Adjusted Life Years (DALY) decreased notably, and the proportion of Years of Life Lost (YLL) decreased from 62.73 to 39.03%. Concerning incidence, the period Rate Ratio (RR) in the PRC initially increased and then decreased, while the cohort RR in the PRC and globally exhibited a consistent upward trend. In terms of mortality, period RR and cohort RR in the PRC displayed a gradual decrease, with mortality starting higher but eventually falling below the global mortality. The net drifts of incidence were greater than 0, whereas the net drifts of mortality were less than 0, both were lower in the PRC than at the global level. Decomposition analysis indicated that the changes of incidence and mortality in the PRC were mainly attributed to epidemiological changes. Additionally, global disparities in epilepsy decreased, with the burden concentrating in low SDI countries. The incidence of epilepsy in the PRC rose during the 30-year study period, while epilepsy mortality decreased. The improved survival rate in the PRC is predominantly attributable to epidemiological changes. The burden of epilepsy in the PRC predominantly affects males, children, and the elderly, Chinese government should focus on specific populations.

“Epilepsy 90–80–70”: The Intersectoral Global Action Plan on epilepsy and other neurological disorders (2022–2031)

Epilepsy is one of the oldest known nervous system disorders and imposes enormous physical, psychological, social and economic burden on individuals, families and countries due to misunderstanding and stigmatization. These problems are most relevant for developing countries, where up to 85 % of epilepsy patients live. Despite the fact that it is a treatable and preventable disorder, there is a lack of adequate public awareness and understanding of the problems of epilepsy. This article is devoted to the Intersectoral Global Action Plan on epilepsy and other neurological disorders (IGAP) 2022–2031, adopted on 27 May 2022 at the 150th session of WHO’s Executive Board. It provides data on the public and medical importance of epilepsy, the history of the joint initiatives of WHO, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) aimed at reducing the burden of epilepsy on society and improving public knowledge about neurological disorders. The key provisions of the Intersectoral Global Action Plan on epilepsy and other neurological disorders 2022–2031 are announced. The Epilepsy 90–80–70 cascade target, launched by ILAE and IBE, is presented to inspire decades of action and significantly improve care and treatment for all people living with epilepsy worldwide. The final section is devoted to the evolution of epileptology at Almazov National Medical Research Centre, its present and its prospects.

Epilepsy among the older population of sub-Saharan Africa: Analysis of the global burden of disease database

IntroductionEpilepsy is considered one of the most burdensome neurologic diseases by the World Health Organization due to the high risk of morbidity and mortality. Few studies have investigated the epidemiology of idiopathic epilepsy in Sub-Saharan Africa (SSA). This study aims to characterize the disease burden of epilepsy among the older population in SSA via a large international database. MethodsDescriptive epidemiological data from the Global Burden of Disease (GBD) database was collected for idiopathic epilepsy in all regions of SSA. The “older” population was defined as 55 years of age and above. The variables of interest included mortality, incidence, prevalence, and disability-adjusted life years (DALYs) rates per one hundred thousand populations. ResultsThe average mortality rate was highest in Western SSA (6.34 per 100,000), and all regions were significantly higher than the global average (p < 0.001). DALYs and incidence rates of idiopathic epilepsy in all regions of SSA were significantly higher than the global averages (p < 0.01). Globally, the older population had a significantly higher mortality rate than the younger population (2.78 vs 1.62, respectively; p < 0.01). The older population had a higher mortality rate than the younger population in each region of SSA (p < 0.01). Conversely, for DALYs, the younger population had a higher disease burden than the older population globally and in each region of SSA (p < 0.01). ConclusionThis study is the first to examine the epidemiologic profile of idiopathic epilepsy in the older population in SSA. Our results indicate that, when compared with the global population, older adults in SSA suffer a greater disease burden and mortality. This study reports the immense need for increased resources and awareness regarding epilepsy in the elderly population of Africa.

The homeless, seizures, and epilepsy: a review.

This review aims to estimate the prevalence of seizures and epilepsy among homeless people in current literature as well as understand the main adversities that this group withstands. We conducted a search for "epilep*", "seizur*", and "homeles*" in titles and abstracts of articles in PubMed. Overall, 25 articles met the final inclusion criteria and warranted analyses. This study suggests that the prevalence of epilepsy in the homeless population is between 2 and 30%, whereas the prevalence of homelessness in people with epilepsy is between 2 and 4%. Every study included in this review corroborates the increased prevalence of seizures and epilepsy among the homeless, which puts them at risk for worse outcomes related to this condition and numerous associated comorbidities. Further evidence is needed to clarify the distinction of primary and secondary seizures in this group, which shows a high rate of confounding factors for seizures like substance abuse or withdrawal and head injury, and to decrease the burden of epilepsy and homelessness in an already resource-deficient community.

The seizure severity score: a quantitative tool for comparing seizures and their response to therapy

Objective. Epilepsy is a neurological disorder characterized by recurrent seizures which vary widely in severity, from clinically silent to prolonged convulsions. Measuring severity is crucial for guiding therapy, particularly when complete control is not possible. Seizure diaries, the current standard for guiding therapy, are insensitive to the duration of events or the propagation of seizure activity across the brain. We present a quantitative seizure severity score that incorporates electroencephalography (EEG) and clinical data and demonstrate how it can guide epilepsy therapies. Approach. We collected intracranial EEG and clinical semiology data from 54 epilepsy patients who had 256 seizures during invasive, in-hospital presurgical evaluation. We applied an absolute slope algorithm to EEG recordings to identify seizing channels. From this data, we developed a seizure severity score that combines seizure duration, spread, and semiology using non-negative matrix factorization. For validation, we assessed its correlation with independent measures of epilepsy burden: seizure types, epilepsy duration, a pharmacokinetic model of medication load, and response to epilepsy surgery. We investigated the association between the seizure severity score and preictal network features. Main results. The seizure severity score augmented clinical classification by objectively delineating seizure duration and spread from recordings in available electrodes. Lower preictal medication loads were associated with higher seizure severity scores (p = 0.018, 97.5% confidence interval = [−1.242, −0.116]) and lower pre-surgical severity was associated with better surgical outcome (p = 0.042). In 85% of patients with multiple seizure types, greater preictal change from baseline was associated with higher severity. Significance. We present a quantitative measure of seizure severity that includes EEG and clinical features, validated on gold standard in-patient recordings. We provide a framework for extending our tool’s utility to ambulatory EEG devices, for linking it to seizure semiology measured by wearable sensors, and as a tool to advance data-driven epilepsy care.

Effect of onchocerciasis elimination measures on the incidence of epilepsy in Maridi, South Sudan: a 3-year longitudinal, prospective, population-based study

High onchocerciasis transmission predisposes endemic communities to a high epilepsy burden. The 4·4% epilepsy prevalence documented in 2018 in Maridi, South Sudan, prompted the strengthening of onchocerciasis elimination measures. Community-directed treatment with ivermectin was implemented annually in 2017, 2018, and 2019, interrupted in 2020, and re-implemented biannually in 2021. We aimed to assess the effect of these interventions, along with slash and clear vector control on the incidence of epilepsy, including nodding syndrome. In this longitudinal, prospective, population-based study, we did a two-stage house-to-house epilepsy survey before (May 10-30, 2018) and after (March 9-19, 2022) the strengthening of onchocerciasis elimination interventions in South Sudan. Strengthening also included the implementation of a community-based slash and clear vector control method that we initiated in 2019 at the Maridi dam (the main blackfly breeding site). Eight sites were surveyed near the Maridi dam and inclusion required residence in one of these sites. All household residents were first screened by community workers, followed by confirmation of the epilepsy diagnosis by trained clinicians. The primary outcome was epilepsy incidence, including nodding syndrome, which was assessed via self-reported new-onset epilepsy in the previous 4 years of each survey, confirmed by clinician assessment. The preintervention survey included 17 652 people of whom 736 had epilepsy (315 female and 421 male), and the post-intervention survey included 14 402 people of whom 586 had epilepsy (275 female and 311 male). When biannual community-directed treatment with ivermectin was initiated in 2021, the intervention's coverage rose by 15·7% (95% CI 14·6-16·8); although only 56·6% of the population took ivermectin in 2021. Between 2018 and 2022, epilepsy incidence decreased from 348·8 (307·2-395·8) to 41·7 (22·6-75·0) per 100 000 person-years. Similarly, the incidence of nodding syndrome decreased from 154·7 (127·6-187·3) to 10·4 (2·7-33·2) per 100 000 person-years. The identified risk factors for epilepsy were: living closer to the Maridi dam, being aged between 6 and 40 years, not taking ivermectin, and being male. In onchocerciasis-endemic areas with high epilepsy prevalence, strengthening onchocerciasis elimination interventions can decrease the incidence of epilepsy, including nodding syndrome. Additional efforts are needed to increase community-directed treatment with ivermectin coverage and sustain blackfly control in Maridi. Research for Health in Humanitarian Crisis, European Research Council, Research Foundation-Flanders, Research Foundation-Flanders, the Italian Agency for Development Cooperation, and La Caixa Foundation.

Approach to epilepsy stigma: From reducing stigma to enhancing dignity

Psychosocial burden of epilepsy is crucial in the care of epilepsy. Traditionally the effort to overcome the psychosocial burden of people with epilepsy has been by reducing social stigma but less on self- perceived stigma. Self-perceived stigma is an aspect of self-esteem and dignity. Maslow has divided the self-esteem and dignity into the “lower” and “higher” version. The “lower” version is the respect from others. The “higher” version is from self-evaluation. Thus, the approach to reduce stigma works toward “lower” version of esteem. A comprehensive approach to increasing esteem and dignity should thus also include efforts toward the “higher” version, to improve self-evaluation. In fact, enhancing self-esteem by reducing stigma also exert its effect through self-evaluation. As self-evaluation is dependent on cultural values, dialogue with the traditional culture, to draw out the relevant elements in the culture is a neglected aspect of comprehensive epilepsy care.

Commentary: Consensus Guidelines on the Appropriate Use of Brand-Name and Generic Anti-Seizure Medication for the Management of Epilepsy in the Gulf Region.

The clinical, social, and economic burden of epilepsy is undeniable. Local guidance on epilepsy management is limited and needed to address the both use of anti-seizure medication (ASM) and switching practices which influence clinical outcomes. An expert panel composed of practicing neurologists and epileptologists from countries of the Gulf Cooperation Council (GCC) met in 2022 to discuss local challenges in the management of epilepsy and formulate recommendations for clinical practice. Published literature on the outcomes of ASM switching was reviewed along with clinical practice/gaps, international guidelines, and local treatment availabilities. Improper ASM use and inappropriate brand-name-to-generic or generic-to-generic switching can contribute to worsening clinical outcomes in epilepsy. ASMs should be used for the management of epilepsy based on patient clinical profile, underlying epilepsy syndrome, and drug availability to ensure optimal and sustainable treatment. Both first-generation and newer ASMs can be considered; appropriate use is recommended from the beginning of treatment. It is critical to avoid inappropriate ASM switching to avoid breakthrough seizures. All generic ASMs should fulfill strict regulatory requirements. If needed, ASM changes should always be approved by the treating physician. ASM switching (brand-name-to-generic, generic-to-generic, generic-to-brand-name) should be avoided in epilepsy patients who have achieved control but can be considered for those uncontrolled on current medication.

Neurocysticercosis in Non-Endemic Areas: The Experience in Qatar (P3-10.007)

<h3>Objective:</h3> To characterize Neurocysticercosis (NCC) in Qatar with a large database of a multiethnic population. <h3>Background:</h3> Qatar is a nation in the Gulf region of the Middle East with a predominantly immigrant population, making it a unique area of study for the epidemiology of NCC. Historically, NCC is not endemic in the region. <h3>Design/Methods:</h3> We retrospectively studied instances of NCC (n=420) recorded in Qatar from 2013–2018 through the national healthcare system. We analyzed the data and stratified it based on several variables such as symptoms, treatment, and outcome, as well as radiological features. <h3>Results:</h3> Out of the 420 patients, 93.6% were men, and 98.3% were immigrants from NCC endemic countries such as Nepal (63.8%) and India (29.5%). Eighty percent of patients presented with seizures, with the majority (69%) experiencing generalized tonic-clonic seizures. Five percent presented with status epilepticus. Headaches, the second most common complaint, were reported in 18% of subjects. On imaging, 50% had a single lesion while 63% were at the calcified stage. The lesions were parenchymal in 99.5% of cases, predominantly in the frontal lobe (59%). Thirteen percent were diagnosed incidentally on imaging, mainly in the form of isolated calcified non-enhancing lesions. Phenytoin was the most prescribed anti-seizure drug (57%), and albendazole was received by 55% of patients. When follow up information was available, clinical improvement was noted in 81% of patients. <h3>Conclusions:</h3> NCC is prevalent in Qatar and remains confined to the large proportion of Southeast Asian immigrants within the population. Given this, dissemination most likely occurred in their countries of origin where NCC is endemic. NCC is a significant contributor to the epilepsy burden in Qatar, often with a good outcome regarding seizure control. NCC with an intraparenchymal single lesion seems to be over represented in our cohort. <b>Disclosure:</b> Miss Nauman has nothing to disclose. Ms. Wahbeh has nothing to disclose. Dr. Shaheen has nothing to disclose. Dr. Abunaib has nothing to disclose. Dr. Melikyan has nothing to disclose. Dr. Mesraoua has nothing to disclose. Dr. Deleu has nothing to disclose. Dr. Al Hail has nothing to disclose. Ahmed El Sotouhy has nothing to disclose. Ziyad Mahfoud, 5273 has nothing to disclose. Dr. Haddad has nothing to disclose.

Neurocysticercosis in non-endemic regions: The experience of Qatar.

To describe the occurrence and features of Neurocystircercosis (NCC) in Qatar. Qatar has a mixed population of natives and expats. NCC is not endemic to the region, but clinical practice suggests its occurrence in large numbers. A database was created to summarize information retrospectively collected on patients with NCC seen through the national health system (HMC) between 2013 and 2018. We identified demographic and disease related variables (clinical manifestations, investigative findings, treatment and outcome) for all patients. Out of 420 identified NCC patients, 393 (93.6%) were men, and 98.3% were immigrants from NCC endemic countries such as Nepal (63.8%) and India (29.5%). Eighty percent of patients presented with seizures, with the majority (69%) experiencing generalized tonic-clonic seizures. Five percent presented with status epilepticus. Headaches, the second most common complaint, were reported in 18% of subjects. On imaging, 50% had a single lesion while 63% included pathology at the calcified stage. The lesions were parenchymal in 99.5% of cases, predominantly in the frontal lobe (59%). Thirteen percent were diagnosed incidentally on imaging, mainly in the form of isolated calcified non enhancing lesions. Albendazole was received by 55% of patients, and phenytoin was the most prescribed anti-seizure drug (57%). When long term follow up was available, 70% of the patients presenting with seizures were completely seizure free. NCC is prevalent in Qatar, mainly within the large Southeast Asian immigrant population. NCC is currently a significant contributor to the epilepsy burden in Qatar, often with a good outcome regarding seizure control. NCC with intraparenchymal single lesion shares a large proportion of our cohort.

The impact of epilepsy on quality of life: Findings from a European survey

IntroductionEpilepsy is a serious neurological disorder affecting the quality of life (QoL) of people with this condition. A survey was conducted in five European countries (France, Germany, Italy, Spain, and the UK) to understand the impact and burden of epilepsy and its treatment on the lives of people with epilepsy (PWE). MethodsFive hundred PWE (taking >1 antiseizure medication [ASM]) and 500 matched controls completed a 30-minute online questionnaire. The 12-Item Short Form Survey (SF-12) was used to measure QoL and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) was used to screen for major depressive disorder (MDD) symptoms. ResultsComorbidities such as migraine, high cholesterol, osteoporosis, and Type 1 diabetes were reported more commonly in PWE, while anxiety disorders, high blood pressure, skin disorders, and mood disorders were more common in controls. However, compared to controls, a significantly higher percentage of PWE had an NDDI-E score of 15–24 (54% vs 35%; p < 0.0001), indicative of MDD symptoms. Significantly more PWE than controls were part-time employed (15% vs 11%; p = 0.03). People with epilepsy had a significantly lower total SF-12 score than controls across the physical and the mental components; compared to controls, a significantly higher proportion of PWE defined their general health as ‘poor’ or ‘fair’ and felt limited in carrying out daily and work activities. Among PWE, those taking ≥3 ASMs were more likely to experience difficulties in carrying out these activities than those on two ASMs. Ability to drive, mood, and level of self-esteem were reported as concerns for PWE. ConclusionEpilepsy has a major impact on the physical and mental health of PWE, interfering with their daily and work activities and overall QoL, and its treatment might also contribute to a lower QoL. The impact of epilepsy on mood and mental health might be under-recognized.

Unlocking the hidden burden of epilepsy in Africa: Understanding the challenges and harnessing opportunities for improved care.

Epilepsy is a common neurological disorder that affects many people in Africa, yet the burden of the disease is often hidden. The management of epilepsy in Africa is often inadequate due to a lack of awareness and education, limited access to diagnostic tools and treatments, inadequate coordination of care, and the stigma associated with the condition. A comprehensive literature review was conducted to gather information on the epidemiology, diagnosis, management, and outcomes of epilepsy in Africa. The review included studies from peer-reviewed journals, government reports, and gray literature. The review revealed a high burden of epilepsy in Africa. The studies also showed a significant gap in the availability and accessibility of diagnostic tools, antiepileptic drugs, and specialized therapies such as physical, occupational, and speech therapy. Additionally, the review found that cultural beliefs and practices, socioeconomic factors such as poverty and lack of access to healthcare, and the stigma associated with the condition, also pose significant challenges to managing epilepsy in Africa. The study highlights the urgent need for improved epilepsy management in Africa. Additionally, the study calls for further research on epilepsy in Africa and collaboration between all stakeholders to improve the management of epilepsy in Africa.

Culturally Informed Neuropsychological Evaluations in Pediatric Epilepsy: Evidence-Based Practice Considerations.

Epilepsy is one of the most common reasons for referral for a pediatric neuropsychological evaluation due its high prevalence in childhood and our well-established clinical role in tertiary care settings. Emerging evidence indicates that racial and ethnic minority populations experience increased epilepsy burden compared with White peers. Although there has been heightened recognition in our specialty regarding the dire need for culturally and linguistically responsive evaluations, the scientific evidence to support effective neuropsychological service delivery for bi/multilingual and bi/multicultural youth with epilepsy is comparatively scant and of poor quality. As a result, significant patient and clinical challenges exist, particularly in high stakes presurgical pediatric epilepsy evaluations of bi/multilingual and bi/multicultural children. Given that Spanish is the most common language spoken in the United States after English, this paper will focus on Spanish and English measures, but will provide evidence-based practice considerations that can inform practices with other non-English speaking communities. Cultural and linguistic factors that affect clinical decision-making regarding test selection, test interpretation, and feedback with families are highlighted. We offer a review of neuropsychological profiles associated with pediatric epilepsy as well as a flexible, multimodal approach for the assessment of linguistically and culturally diverse children with epilepsy based on empirical evidence and the clinical experiences of pediatric neuropsychologists from diverse backgrounds who work with children with epilepsy. Limitations to this approach are discussed, including the lack of available measures and resources for culturally and linguistically diverse pediatric populations. A case illustration highlights a culturally informed assessment approach.

Burden of epilepsy in China and its provinces, 1990 to 2019: findings from the Global Burden of Disease Study 2019.

Epilepsy accounts for a significant portion of the global disease burden. However, little is known about the disease burden of epilepsy in China and its provinces. We assessed the burden of epilepsy in China and its provinces, municipalities, and autonomous regions from 1990 to 2019. Burden was measured as incidence, prevalence, deaths, years lived with disability, years of life lost, and disability-adjusted life years (DALYs), by age, sex, year, and province. We used the Socio-Demographic Index (SDI) to determine the association between the provincial development level and age-standardized DALY rates of epilepsy from 1990 to 2019. In 2019, epilepsy caused 1367.51 thousand (95% uncertainty interval [UI]: 979.92-1837.61 thousand) DALYs, and the age-standardized DALY rate was 99.77 (95% UI: 71.33-133.52)/100,000. The age-standardized incidence and prevalence rates for epilepsy in China were 24.65/100,000 and 219.69/100,000, increased by 45.00% (95% UI: 8.03-98.74%) and 35.72% (95% UI: 0.47-86.19%) compared with that in 1990, respectively. From 1990 to 2019, the proportion of DALY caused by epilepsy in the age group under 25 years steadily decreased. The proportion of DALYs caused by epilepsy in people aged 50 years and over increased from 9.45% and 10.22% in 1990 to 29.01% and 32.72% for male and female individuals in 2019, respectively. The highest age-standardized mortality rates were seen in Tibet (4.26 [95% UI: 1.43-5.66]/100,000), Qinghai (1.80 [95% UI: 1.15-2.36]/100,000), and Yunnan (1.30 [95% UI: 0.88-1.62]/100,000), and the lowest mortality rates were in Guangdong (0.48 [95% UI: 0.39-0.64]/100,000), Zhejiang (0.56 [95% UI: 0.44-0.70]/100,000), and Shanghai (0.57 [95% UI: 0.41-0.73]/100,000). The age-standardized DALY rates across the country and in provinces, municipalities, and autonomous regions generally decreased as their SDI increased. The disease burden of epilepsy is still heavy in China, especially in the western provinces. The incidence and prevalence of epilepsy increased between 1990 and 2019, and the burden of epilepsy in the elderly increases gradually. This study provides evidence on epilepsy prevention and care of different regions in China.

Post-traumatic epilepsy in Cameroon: a retrospective study in a referral hospital

BackgroundPost-traumatic epilepsy is defined as the onset of at least one seizure beyond the first week following a traumatic brain injury (TBI). High prevalence of TBI in our setting may contribute to the burden of epilepsy in adult population. This is a retrospective review of medical records of patients admitted from January 1st, 2010 to December 31st, 2019) at Douala General Hospital. We included patients aged ≥ 18 years with seizure onset at least one week after TBI. Incomplete files and previously known epilepsy were excluded. Data on sociodemography, clinical and para-clinical features, treatment and outcome were analysed using R software version 36.2.ResultsWe finally included 65 patients with post-traumatic epilepsy among 993 medical records of epilepsy. The mean age was 35.1 ± 12.6 years, with 64.6% of male. Road traffic accident was the main aetiology of brain trauma (78.5%), resulting in haemorrhagic contusions (21.5%), sub-dural haematoma (15.4%), and diffuse axonal lesions (15.4%) mainly. Seizure onset was within 2 years post-trauma in 73.8% of cases. Generalized tonic–clonic seizures were the commonest seizure’s type. Electroencephalogram was abnormal in 81%, including 47% of focal discharges. Antiepileptic drugs were mainly sodium valproate, carbamazepine, and phenobarbital. Seizure freedom was obtained in 67.7% of cases.ConclusionsPost-traumatic epilepsy is a heterogeneous, frequent and often disabling complication of traumatic brain injury. Road traffic accident is the main cause of brain trauma. It affects a young and active population. About half of cases presented GTCS. With antiepileptic drugs, more than two-thirds of patients become seizure-free.