Epilepsy Care Research Articles

Effects of an intervention program to improve mental health and epilepsy care in Madagascar

BackgroundDespite the high prevalence of mental disorders and epilepsy in low- and middle-income countries, nearly 80% of patients are not treated. In Madagascar, initiatives to improve access to epilepsy and mental health care, including public awareness and training of general practitioners (GPs), were carried out between 2013 and 2018. Our study's main objective was to assess the effectiveness of these initiatives, two to five years post-intervention. MethodsThis quasi-experimental study (intervention vs. control areas) included five surveys assessing: general population's Knowledge Attitudes and Practices (KAP), GPs' KAP , number of epilepsy and mental health consultations at different levels of the healthcare system, diagnostic accuracy, and treatments' availability. OutcomesIn the general population, KAP scores were higher in intervention areas for epilepsy (11.4/20 vs. 10.3/20; p = 0.003). For mental disorders, regardless of the area, KAP scores were low, especially for schizophrenia (1.1/20 and 0.1/20). Among GPs, KAP scores were higher in intervention areas for schizophrenia (6.0/10 vs. 4.5/10; p = 0.008) and epilepsy (6.9/10 vs. 6.2/10; p = 0.044). Overall, there was a greater proportion of mental health and epilepsy consultations in intervention areas (4.5% vs 2.3%). Although low, concordance between GPs' and psychiatrists' diagnoses was higher in intervention areas. There was a greater variety of anti-epileptic and psychotropic medications available in intervention areas. InterpretationThis research has helped to better understand the effectiveness of initiatives implemented in Madagascar to improve epilepsy and mental health care and to identify barriers which will need to be addressed. FundingSanofi Global Health, as part of the Fight Against STigma Program.

Epilepsy Care in Latin America and the Caribbean: Overcoming Challenges and Embracing Opportunities.

The burden of epilepsy in the Latin America and the Caribbean (LAC) region causes a profound regional impact on the health care system and significantly contributes to the global epilepsy burden. As in many other resource-limited settings worldwide, health care professionals and patients with epilepsy in LAC countries face profound challenges due to a combination of factors, including high disease prevalence, stigmatization of epilepsy, disparities in access to care, limited resources, substantial treatment gaps, insufficient training opportunities for health care providers, and a diverse patient population with varying needs. This article presents an overview of the epidemiology of epilepsy and discusses the principal obstacles to epilepsy care and key contributors to the epilepsy diagnosis and treatment gap in the LAC region. We conclude by highlighting various initiatives across different LAC countries to improve epilepsy care in marginalized communities, listing strategies to mitigate treatment gaps and facilitate better health care access for patients with epilepsy by enhancing the epilepsy workforce.

It’s About Time! Timing in Epilepsy Evaluation and Treatment

The 2023 American Epilepsy Society Annual Course “It’s About Time” addressed timing in epilepsy evaluation and treatment with respect to health disparity and vulnerable populations and diagnostic, clinical, and epilepsy surgery evaluation. This comprehensive course included topics on gaps in epilepsy care and optimization of behavioral health for patients with epilepsy. The summary details current knowledge in areas of seizure forecasting and epileptogenesis. Intricacies and controversies over timing were discussed for treatment of nonconvulsive seizures and ictal-interictal patterns, acute symptomatic seizures, neuromodulation versus surgery, and epilepsy surgery in status epilepticus. Timing regarding clinical care in autoimmune-associated epilepsy, developmental and epileptic encephalopathy, and dietary therapy were examined. Additionally, salient topics on using novel biomarkers and collaboration with neuropsychological outcomes were also tackled in this all-encompassing lecture series.

241 Disparities in Access to Epilepsy Surgery Care in Children With Drug Resistant Epilepsy: Implications For Long-Term Survival Outcomes

INTRODUCTION: Our recent publication in Lancet Child and Adolescent Health examined long-term survival rates for pediatric patients with drug-resistant epilepsy (DRE) treated with antiseizure medications (ASMs) only, ASMs plus vagus nerve stimulation (VNS), and ASMs plus cranial epilepsy surgery in a large United States (US) administrative database. The difference in survival probabilities was statistically significant (p < .001). Adjusted probabilities of survival beyond 10 years were 89.27% for the ASMs only cohort (95%CI, 87.71%-90.85%), 92.65% for VNS cohort (95%CI, 90.62%-94.72%), and 98.45% for cranial surgery cohort (95%CI, 97.53%-99.38%). METHODS: Patients aged 0-17 years with DRE between 01/01/2004-31/12/2020 were identified from the Pediatric Health Information System data set across 49 US pediatric hospitals. Patients treated with ASMs only or ASMs plus VNS or ASMs plus cranial epilepsy surgery were included. Chi-square tests determined associations between treatment time and preoperative factors such as treatment type, age, sex, race/ethnicity, insurance type, geographic region, epilepsy type, and medical complexity (presence of pediatric complex chronic conditions [PCCCs]). RESULTS: 18,292 total patients were included: 10,240 patients treated with ASMs only, 5,019 patients with ASMs plus VNS, 3,033 patients with ASMs plus cranial epilepsy surgery. There were significant differences in age, geographic region, race/ethnicity, presence of PCCCs, diagnosis, and insurance type (p < 0.001). Those treated surgically, either with VNS implantation or cranial epilepsy surgery, were 2 years older than ASMs only. ASMs only patients were less ikely to be reported as non-Hispanic white (51.78%), less likely have a focal/partial epilepsy diagnosis (8.74%), and less likely carry private medical insurance (35.82%). CONCLUSIONS: We show a link of disparities in pediatric epilepsy surgery care and survival outcomes. Focused strategies are needed to expand access to comprehensive epilepsy care with neurosurgical evaluation and offerings when appropriate.

Health care utilization of Hispanic/Latino veterans with epilepsy: A national population-based study.

Hispanic/Latino people with epilepsy are a growing population that has been understudied in clinical epilepsy research. U.S. veterans are at a higher risk of epilepsy due to greater exposures including traumatic brain injury. Hispanic/LatinoVeterans with Epilepsy (HL-VWEs) represent a growing population; however the treatment utilization patterns of this population have been vastly understudied. HL-VWE were identified from administrative databases during fiscal year 2019. Variables compared between Hispanic and non-Hispanic VWEs included demographics, rurality, service era, utilization of clinical services/investigations, and service-connected injury. Chi-square and Student's t tests were used for comparisons. Among 56 556 VWEs, 3247 (5.7%) were HL. HL-VWEs were younger (59.2 vs 63.2 years; p < .01) and more commonly urban-dwelling (81.6% vs 63.2%, p < .01) compared to non-HL-VWEs. They were also more likely to have served in recent missions such as the Persian Gulf War and post- 9/11 wars (p < .01). HL-VWEs had a higher utilization of all neurology services examined including neurology clinic visits, computed tomography (CT) scans, magnetic resonance imaging (MRI) scans, electroencephalography (EEG), epilepsy monitoring, and comprehensive epilepsy care (p < .01 for all). HL-VWEs were more likely to visit an emergency room or have seizure-related hospitalizations (p < .01). HL-VWEs were more likely to have a service-connected disability greater or equal to 50% (p < .01). This study is one of the largest cohorts examining HL-VWEs. We found higher utilization of services in neurology, epilepsy, and neuroimaging by HL-VWEs. HL-VWE are younger, more commonly urban-dwelling, and more likely to have served during recent combat periods and have higher amounts of service-connected disability. Given that the proportion of Hispanic veterans is projected to rise over time, more research is needed to provide the best interventions and mitigate the long-term impact of epilepsy on this diverse patient group.

Artificial Intelligence: Fundamentals and Breakthrough Applications in Epilepsy

Artificial intelligence, machine learning, and deep learning are increasingly being used in all medical fields including for epilepsy research and clinical care. Already there have been resultant cutting-edge applications in both the clinical and research arenas of epileptology. Because there is a need to disseminate knowledge about these approaches, how to use them, their advantages, and their potential limitations, the goal of the 2023 Merritt-Putnam Symposium and of this synopsis review of that symposium has been to present the background and state of the art and then to draw conclusions on current and future applications of these approaches through the following: (1) Initially provide an explanation of the fundamental principles of artificial intelligence, machine learning, and deep learning. These are presented in the first section of this review by Dr Wesley Kerr. (2) Provide insights into their cutting-edge applications in screening for medications in neural organoids, in general, and for epilepsy in particular. These are presented by Dr Sandra Acosta. (3) Provide insights into how artificial intelligence approaches can predict clinical response to medication treatments. These are presented by Dr Patrick Kwan. (4) Finally, provide insights into the expanding applications to the detection and analysis of EEG signals in intensive care, epilepsy monitoring unit, and intracranial monitoring situations, as presented below by Dr Gregory Worrell. The expectation is that, in the coming decade and beyond, the increasing use of the above approaches will transform epilepsy research and care and supplement, but not replace, the diligent work of epilepsy clinicians and researchers.

Differential perspective between public and private healthcare in epilepsy reference centers in Mexico

Background: Public and private healthcare in epilepsy are two different systems for citizens to enjoy health. Aims: The objective was to compare epidemiological and social data between public and private hospitals in epilepsy care in Mexico. Methods: Descriptive, prospective, observational, and longitudinal study. Inclusion criteria were patients with epilepsy from March 2021 to December 2022 in a tertiary private hospital (1) and public hospitals (89) in Mexico. Study variables were age, gender, type of epilepsy, etiology, number of seizures, paraclinical studies, and treatment. We compare epidemiological and social data between public and private hospitals in epilepsy care. Information was captured in Excel and analyzed in SPSS. Results: A total of 554 patients from the private hospital and 10,852 patients from the public hospitals were treated. In private hospitals, we found that there is a smaller sample of patients, less family history of epilepsy, and increased diagnosis of epileptic syndromes. Also, there are more genetic etiologies, less structural etiologies, and less drug resistance. Besides, more epilepsy surgery, and access to paraclinical studies. In public hospitals, we found that there is a larger sample of patients, more family history of epilepsy, and fewer diagnoses of epileptic syndromes. Also, there are fewer genetic etiologies, more structural etiologies, and more drug resistance. Besides, less epilepsy surgery, and less access to paraclinical studies. Conclusion: In private hospitals, we found more epilepsy surgery and access to paraclinical studies than in public hospitals. In Mexico, programs have been created to unify both systems and achieve the same diagnostic and treatment opportunities.

Racial disparities in the utilization of invasive neuromodulation devices for the treatment of drug-resistant focal epilepsy.

Racial disparities affect multiple dimensions of epilepsy care including epilepsy surgery. This study aims to further explore these disparities by determining the utilization of invasive neuromodulation devices according to race and ethnicity in a multicenter study of patients living with focal drug-resistant epilepsy (DRE). We performed a post hoc analysis of the Human Epilepsy Project 2 (HEP2) data. HEP2 is a prospective study of patients living with focal DRE involving 10 sites distributed across the United States. There were no statistical differences in the racial distribution of the study population compared to the US population using census data except for patients reporting more than one race. Of 154 patients enrolled in HEP2, 55 (36%) underwent invasive neuromodulation for DRE management at some point in the course of their epilepsy. Of those, 36 (71%) were patients who identified as White. Patients were significantly less likely to have a device if they identified solely as Black/African American than if they did not (odds ratio = .21, 95% confidence interval = .05-.96, p = .03). Invasive neuromodulation for management of DRE is underutilized in the Black/African American population, indicating a new facet of racial disparities in epilepsy care.

High-Value Epilepsy Care in the United States: Predictors of Increased Costs and Complications from the National Inpatient Sample Database 2016–2019

IntroductionFor patients with medically refractory epilepsy newer minimally invasive techniques such as Laser Interstitial Thermal Therapy (LITT) have been developed in recent years. This study aims to characterize trends in the utilization of surgical resection versus LITT to treat medically refractory epilepsy, characterize complications, and understand the cost of this innovative technique to the public. MethodsThe National Inpatient Sample (NIS) database was queried from 2016 to 2019 for all patients admitted with a diagnosis of medically refractory epilepsy. Patient demographics, hospital length of stay, complications, and costs were tabulated for all patients who underwent LITT or surgical resection within these cohorts. ResultsA total of 6,019 patients were included, 223 underwent LITT procedures while 5,796 underwent resection. Significant predictors of increased patient charges for both cohorts included diabetes (OR 1.7, CI 1.44-2.19), infection (OR 5.12, CI 2.73-9.58), and hemorrhage (OR 2.95, CI 2.04-4.12). Procedures performed at non-teaching hospitals had 1.54 greater odds (CI 1.02-2.33) of resulting in a complication compared to teaching hospitals. Insurance status did significantly differ (p=0.001) between those receiving LITT (23.3% Medicare; 25.6% Medicaid; 44.4% Private insurance; 6.7 Other) and those undergoing resection (35.3% Medicare; 22.5% Medicaid; 34.7% Private Insurance; 7.5% other). When adjusting for patient demographics, LITT patients had shorter length of stay (2.3 vs 8.9 days, p < 0.001), lower complication rate (1.9% vs 3.1%, p=0.385), and lower mean hospital ($139,412.79 vs $233,120.99, p < 0.001) and patient ($55,394.34 vs $37,756.66, p < 0.001) costs. ConclusionThe present study highlights LITT’s advantages through its association with lower costs and shorter length of stay. The present study also highlights the associated predictors of LITT vs resection, such as that most LITT cases happen at academic centers for patients with private insurance. As the adoption of LITT continues, more data will become available to further understand these issues.

Integrated Care in Epilepsy Management: A Scoping Review of the Models and Components of Health and Social Care Delivery.

Epilepsy is the most common neurological condition globally. Integrating health and social care is fundamental in epilepsy management, but the scope of progress in this area is unclear. This scoping review aimed to capture the range and type of integrated care components and models in epilepsy management. Four databases were searched for articles published since 2010 that reported on integrated care in epilepsy. Data were extracted and synthesised into components of integrated care that had been implemented or recommended only. Models of integrated care were identified, and their components tabulated. Fifteen common and interrelated components of integrated care emerged that were aligned with four broad areas: healthcare staff and pathways (e.g., epilepsy nurses); tasks and services (e.g., care coordination); education and engagement (e.g., shared decision making); and technology for diagnosis and communication (e.g., telehealth). Twelve models of integrated care were identified; seven were implemented and five were recommended. There is a growing evidence-base supporting integrated, person-centred epilepsy care, but implementation is challenged by entrenched silos, underdeveloped pathways for care, and deficits in epilepsy education. Integrating epilepsy care relies on changes to workforce development and policy frameworks to support whole-of-system vision for improving care.

Evaluating the Current State of Epilepsy Care in the Province of Ontario.

There are numerous challenges pertaining to epilepsy care across Ontario, including Epilepsy Monitoring Unit (EMU) bed pressures, surgical access and community supports. We sampled the current clinical, community and operational state of Ontario epilepsy centres and community epilepsy agencies post COVID-19 pandemic. A 44-item survey was distributed to all 11 district and regional adult and paediatric Ontario epilepsy centres. Qualitative responses were collected from community epilepsy agencies. Results revealed ongoing gaps in epilepsy care across Ontario, with EMU bed pressures and labour shortages being limiting factors. A clinical network advising the Ontario Ministry of Health will improve access to epilepsy care.

Guidelines for Specialized Epilepsy Centers: Executive Summary of the Report of the National Association of Epilepsy Centers Guideline Panel.

The National Association of Epilepsy Centers first published the guidelines for epilepsy centers in 1990, which were last updated in 2010. Since that update, epilepsy care and the science of guideline development have advanced significantly, including the importance of incorporating a diversity of stakeholder perspectives such as those of patients and their caregivers. Currently, despite extensive published data examining the efficacy of treatments and diagnostic testing for epilepsy, there remain significant gaps in data identifying the essential services needed for a comprehensive epilepsy center and the optimal manner for their delivery. The trustworthy consensus-based statements (TCBS) process produces unbiased, scientifically valid guidelines through a transparent process that incorporates available evidence and expert opinion. A systematic literature search returned 5937 relevant studies from which 197 articles were retained for data extraction. A panel of 41 stakeholders with diverse expertise evaluated this evidence and drafted recommendations following the TCBS process. The panel reached consensus on 52 recommendations covering services provided by specialized epilepsy centers in both the inpatient and outpatient settings in major topic areas including epilepsy monitoring unit care, surgery, neuroimaging, neuropsychology, genetics, and outpatient care. Recommendations were informed by the evidence review and reflect the consensus of a broad panel of expert opinions.

Delphi consensus on the transition from paediatric to adult epilepsy care

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

From goat-fall to modern epilepsy surgery—the development of epilepsy care in Norway

AbstractThroughout history, epilepsy has been considered a mysterious and unexplained illness. People with tonic–clonic seizures were believed to be possessed by evil spirits, and in Norway, as in many other countries, these people were stigmatized, discriminated against, and often excluded from society. Only in the second part of the 19th century did a shift take place from a magical to a scientific view of the disease. Nevertheless, until the middle of the 20th century epilepsy was confused with psychiatric illness in Norway. Although people with epilepsy today are not stigmatized to the same degree as before, we still have some way to go.

Epilepsy care and outcome in low- and middle-income countries: A scoping review.

Epilepsy is a common neurological condition in low- and middle-income countries (LMICs). This study aims to systematically review, analyze, evaluate, and synthesize information on the current state of medical and surgical management and outcomes of epilepsy in LMICs. Systematic searches were conducted on MEDLINE, EMBASE, World Health Organization Global Index Medicus, African Journals Online, WOS, and Scopus, covering the period from the inception of the databases to August 18th, 2021, focusing on studies reporting management and outcomes of epilepsy in LMICs. A total of 2298 unique studies were identified, of which, 48 were included (38035 cases). The mean age was 20.1 ± 19.26 years with a male predominance in 60.92% of cases. The type of seizure commonly reported in most of the studies was absence seizures (n = 8302, 21.82%); partial focal seizure (n = 3891, 10.23%); and generalized tonic-clonic seizures (n = 3545, 9.32%) which were the next most common types of seizures. Mesiotemporal epilepsy was less frequently reported (n = 87, 0.22%). Electroencephalogram was commonly used (n = 2516, 6.61%), followed by computed tomography scan (n = 1028, 2.70%), magnetic resonance imaging (n = 638, 1.67%), and video telemetry (n = 484, 1.27%) in the care of patients with seizures. Primary epilepsy was recorded in 582 patients (1.53%) whereas secondary epilepsy was present in 333 patients (0.87%). Carbamazepine was the most used anti-epileptic drug (n = 2121, 5.57%). Surgical treatment was required for 465 (1.22%) patients. In LMICs, epilepsy is underreported. There is still a lack of adequate tools for the diagnosis of primary or secondary epilepsy as well as adequate access to medical management of those reported.

Potential merits and flaws of large language models in epilepsy care: A critical review.

The current pace of development and applications of large language models (LLMs) is unprecedented and will impact future medical care significantly. In this critical review, we provide the background to better understand these novel artificial intelligence (AI) models and how LLMs can be of future use in the daily care of people with epilepsy. Considering the importance of clinical history taking in diagnosing and monitoring epilepsy-combined with the established use of electronic health records-a great potential exists to integrate LLMs in epilepsy care. We present the current available LLM studies in epilepsy. Furthermore, we highlight and compare the most commonly used LLMs and elaborate on how these models can be applied in epilepsy. We further discuss important drawbacks and risks of LLMs, and we provide recommendations for overcoming these limitations.

Provider Experience With the Use of Ketamine for Refractory Status Epilepticus.

Refractory status epilepticus (RSE) treated with anesthetic agents can be associated with complications including respiratory depression and hypotension. Ketamine is an emerging RSE treatment, but optimal dosing and timing are unknown. We studied provider attitudes and practices regarding the use of ketamine for RSE. A literature review informed the creation of the survey, developed by professionals in epilepsy, pharmacy, and neurocritical care. The survey was distributed to members of the Critical Care EEG Monitoring and Research Consortium, Neurocritical Care Society, American Academy of Neurology Synapse community, American Epilepsy Society, and the Canadian League Against Epilepsy. Descriptive statistics were calculated. There were 109 respondents. First-line agents for RSE were midazolam (53%), propofol (42%), pentobarbital (2%), and ketamine (1%). Reasons for ketamine use included failure of midazolam/propofol to control seizures (81%) or hypotension on another anesthetic (35%). Perceived contraindications included hypertension (37%), elevated intracranial pressure (24%), and heart failure (18%). Perceived benefits included decreased use of vasopressors (53%) and more rapid RSE control when used adjunctively (49%). Routine ketamine users often treated more than 10 RSE cases per year, worked as intensivists or at academic institutions. Of the respondents, 59% found ketamine useful for RSE and 94% were interested in learning more about its use. Although most participants found ketamine helpful for RSE, it is mainly used as a second-line agent adjunctively with midazolam or propofol. Perceived ketamine benefits included decreased need for hemodynamic support and more rapid seizure control when used in conjunction with other anesthetics. Perceived contraindications centered on cardiac and intracranial pressure concerns.

Qualitative Analysis of Decision to Pursue Electrical Brain Stimulation by Patients With Drug-Resistant Epilepsy and Their Caregivers.

To understand why patients with drug-resistant epilepsy (DRE) pursue invasive electrical brain stimulation (EBS). We interviewed patients with DRE (n = 20) and their caregivers about their experiences in pursuing EBS approximately 1 year post device implant. Inductive analysis was applied to identify key motivating factors. The cohort included participants aged from teens to 50s with deep brain stimulation, vagus nerve stimulation, responsive neurostimulation, and chronic subthreshold cortical stimulation. Patients' motivations included (1) improved quality of life (2) intolerability of antiseizure medications, (3) desperation, and (4) patient-family dynamics. Both patients and caregivers described a desire to alleviate burdens of the other. Patient apprehensions about EBS focused on invasiveness and the presence of electrodes in the brain. Previous experiences with invasive monitoring and the ability to see hardware in person during clinical visits influenced patients' comfort in proceeding with EBS. Despite realistic expectations for modest and delayed benefits, patients held out hope for an exceptionally positive outcome. Our findings describe the motivations and decision-making process for patients with DRE who pursue invasive EBS. Patients balance feelings of desperation, personal goals, frustration with medication side effects, fears about surgery, and potential pressure from concerned caregivers. These factors together with the sense that patients have exhausted therapeutic alternatives may explain the limited decisional ambivalence observed in this cohort. These themes highlight opportunities for epilepsy care teams to support patient decision-making processes.

Minori in viaggio per farsi curare

Equitable access to healthcare is crucial to ensure the fundamental human right to health for all, also for children. However, the possibility to use in appropriate manner medical services (e.g. to access hospital) differs substantially across Italian regions. It is a situa- tion, source of inequality, that has been known for some time and has not found a solu- tion to date. In 2020, the pandemic year, 74.071 hospital admissions occurred for chil- dren and adolescents residing in regions other than that of hospitalization (14.3% of to- tal hospitalizations outside the region of residence). The national flight index was 8.7 ranging from 3.4 of Lazio to 43.4 of Molise. 54.8% of out-region hospitalizations are for patients traveling from one of the regions bordering their residence, in particular to be born. The starting regions with the highest mobility rate and long distance hospitalisation were Calabria, Sardinia, and Sicily with a flight index of 29.0, 11.8 and 11.5 for a to- tal of 11,745 hospitalizations. The main causes of hospitalization in a region far from their own are attributable to psychiatric disorders (43.3% of its Major Diagnostic Cate- gory), epilepsy and cephalalgy care (24.3%), and surgery for the replacement of major joints or reimplantation of the lower limbs with (18.5%). The phenomenon of medical mi- gration undermines the principles of universality, equality and fairness and it is therefore necessary to intervene to guarantee an unfulfilled right in its entirety. Centers of excellen- ce for pediatric care and clinical research are also needed in the southern regions.

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.