Review of epilepsy care in the Democratic Republic of the Congo
Abstract
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.
Key Points
- The DRC lacks national epilepsy prevalence data and surveillance systems, leaving the healthcare system ill-equipped to address the intricacies of epilepsy care.
- Epilepsy care confronts deficiencies in culturally competent resources. Furthermore, economic obstacles impede access to comprehensive care and evidence-based treatments.
- Traditional healers maintain a strong influence over PWE and families due to prevailing misconceptions about the disease.
- A collaborative, multifaceted approach is essential to enhance epilepsy care in the DRC through providing adequate resources, fostering supportive PWE environments, and improving quality of life.
1 INTRODUCTION
Global neurology seeks to address healthcare inequity in low- and middle-income countries (LMICs) by applying public health strategies to increase the capacity of neurological care, thereby alleviating the burden of neurological diseases. While some barriers to healthcare access in the Democratic Republic of the Congo (DRC) are unique to the region, many resonate with other LMICs. This critical review characterizes epilepsy care in the DRC, explores its historical background, and discusses how it has co-evolved with research on the region's predominant epilepsy pathophysiology. We further examine societal beliefs and economic obstacles impacting epilepsy care in the DRC, most of which are shared across sub-Saharan Africa (SSA).
Epilepsy affects over 50 million people worldwide, with 80% residing in LMICs.1 Equatorial LMICs in SSA exhibit highly variable epilepsy prevalence, ranging from 5.2 to 74 per 1000 population.2 A complex interplay of societal perspectives and economic limitations stymies evaluation of epilepsy burden in the DRC. While lacking a national epilepsy registry, estimates based on localized prevalence at select Congolese rural communities and data from the Centre Neuropsychopathologique (CNPP), a 450-bed neuropsychiatric hospital affiliated with the University of Kinshasa,4 approximate the prevalence to range between 5.7% and 8.4%.3 At the CNPP, epilepsy accounts for 0.49% of all neuropsychiatric consultations, while pediatric epilepsy syndromes in children aged 0–7 comprise 1.82%.2 Despite insufficient data to estimate national prevalence, the high frequency of peri- and postnatal brain disorders, nervous system infections, malaria, onchocerciasis, cysticercosis, tumors, strokes, and traumatic brain injuries raises concern for widespread undiagnosed–and untreated–epilepsy across the general population. This underscores the urgent need to quantify national prevalence across relevant cohorts, evaluate needs, and establish initiatives to expand treatment capacity for patient-centered epilepsy care.
2 BACKGROUND
During the colonial era in the DRC (pre-1960), neurological conditions were not prioritized. Most resources addressed endemic infections like malaria and dysentery. Patients with neuropsychiatric illnesses were treated at the underequipped Mount Stanley Lazaret psychiatric facility, built, and opened in 1926 and 1928, respectively. It was renamed the Mount Stanley Psychiatric Institute in 1960.4 The growing interest in neurological conditions facilitated expertise to treat some neuropsychiatric conditions like psychosis. However, epilepsy was not listed in the National Health Information System (NHIS) as a treated neurological disease during this period. Only after independence (post-1960) was epilepsy first diagnosed, treated, and investigated through pioneering efforts by Professor Guy Dechef, the inaugural Professor of Neuropsychiatry at the University of Kinshasa.5 He characterized and differentiated childhood and adult epilepsy clinically and etiologically in the DRC, publishing the first Congolese epilepsy research in 1970, titled “The Notion of the Epidemiology of Epilepsy in the Congo”.6 This led to the NHIS listing epilepsy as a treatable neurological disease in 2004. Professor Dechef trained students to continue epilepsy clinical care and research, including neurologist Professor Kazadi Kayembe Théodore, the first president of the Congolese League Against Epilepsy (CLaE). Established in 2013, CLaE functions in collaboration with the CNPP to provide educational and research resources to understand, diagnose, and treat epilepsy. CLaE was renamed the Ligue Congolaise Contre L'Epilepsie (LICOCE), currently led by Professor Luabeya Mesu’ a Kabwa.
Subsequent Advances in epilepsy care have since been spearheaded by a group of Congolese neurologists at the CNPP (Table 1). Current clinical care and research efforts focus on the psychosocial impacts of epilepsy10, 11 as well as infectious etiologies like neurocysticercosis and onchocerciasis.3, 12 More work is needed to bolster the local healthcare system, enhance clinical practices, and promote ongoing research.
| Dr. Selemani Salumua |
| Dr. Okitundu Luwa-E-Andjafono Danielb |
| Dr. N'situ Mankubu Adelin |
| Dr. Kashama wa Kashama Jean-Marieb |
| Dr. Lusamba Muteba Jeanine |
| Dr. Mukeba Kahamba Daniel Lord |
| Dr. Kaputu Malu Kalala Celestin |
- Abbreviations: CNPP, Centre Neuropathophysiologique; DRC, Democratic Republic of Congo.
- a Dr. Selemani is known for his extensive research and clinical experience in epilepsy treatment. He researched the clinical impact and side effects of different Anti-Seizure Medications (ASMs) such as carbamazepine.7
- b Dr. Okitundu and Dr. Kashama focus on the clinical and etiologic aspects of epilepsy in children and adults,8 an area previously explored by Prof. Dechef.9
3 PATHOPHYSIOLOGY AND CLINICAL PRESENTATION
Historically, epilepsy etiology in the Democratic Republic of the Congo (DRC) was categorized into three groups: (1) idiopathic epilepsies of hereditary or familial origin, (2) symptomatic epilepsies resulting from clinically appreciable brain damage, and (3) cryptogenic epilepsies of presumed or unproven etiology.13 All laboratory and clinical epilepsy research centered around those etiologies.
More recently, six etiological categories are described: genetic, structural, infectious, metabolic, autoimmune, and unknown origin.
Although research on most etiologies remains limited, local efforts increasingly focus on infectious causes, particularly Onchocerca volvulus infection, given mounting evidence of its role as a major risk factor for epilepsy in onchocerciasis-endemic regions like the DRC.14 A meta-analysis of African population-based surveys demonstrated a 0.4% increase in epilepsy prevalence for every 10% increase in onchocerciasis prevalence.15 Subsequent studies further illustrated significantly higher epilepsy prevalence in onchocerciasis meso- and hyperendemic regions (with >20% of adults having onchocerciasis nodules), some of which are located within the DRC.16 Colebunders et al.17 strengthened this proposed relationship by showing that onchocerciasis meets four of the eight Bradford Hill criteria for causality regarding epilepsy. Their study suggests that residing in endemic areas, early onchocerciasis infection, and genetic factors may play major roles in onchocerciasis-associated epilepsy (OAE).17 Although the pathophysiology of OAE remains to be fully elucidated, a team of Congolese scientists led by Dr. Jean Marie Kashama is investigating the neuroinflammation and autoimmunity implications of OAE to establish a consistent, reproducible, and generalizable evidence-based theory regarding the manifestations of OAE in the DRC.
In the DRC, the age of onset for most epilepsy syndromes is generally between 0 and 20 years. Specifically for OAE, onset is typically between 3 and 18 years, with a mean age of 8–12 years.2, 15 Males are predominantly affected, comprising about 60% of the OAE patient population.2, 6, 12, 18 The most frequent seizure type across all etiologies is generalized tonic–clonic, followed by atonic generalized seizures and focal clonic seizures.19 However, the prevalence of focal seizures may be underestimated due to the difficulty of detecting non-convulsive events in non-specialist settings.20, 21 OAE has unique phenotypic features including nodding seizures (“repeated, involuntary forward bobbing of head with reduced consciousness”) and Nakalanga syndrome (“growth retardation, dysmorphic features, and cognitive decline”).19 More clinical investigation is still needed to fully characterize the spectrum of epileptic manifestations across etiologies in the DRC.
4 ASSESSMENT AND DIAGNOSIS
In the DRC, epilepsy diagnosis is categorized as known or suspected. Known epilepsy is established following witnessed generalized seizures, while suspected epilepsy uses a two-step approach—a screening questionnaire followed by neurological examination for positives. Both diagnoses follow the 2014 ILAE criteria and 2017 ILAE classification system.14 EEG and neuroimaging confirm diagnoses when available. Paraclinical examinations, like ionograms to assess hypocalcemia and hypomagnesemia, are conducted especially in pediatric cases. Diagnosing OAE requires sudden seizure onset without abnormalities.14
Detecting behavioral, cognitive, and neuropsychiatric manifestations is limited by the lack of adapted tools and specialty services. However, progress is being made. Several neuropsychiatric measures have been translated and adapted for Congolese populations.22 The African Neuropsychology Battery, developed in the DRC, is the first multi-domain cognitive test battery from sub-Saharan Africa.23 It has shown good psychometric properties24 and normative learning/memory data from DRC controls exist.25 Ongoing validation in Congolese populations will help determine epilepsy-related cognitive disorder prevalence.
5 TREATMENT
5.1 Pharmacotherapy
Anti-seizure medications (ASMs) are the mainstay of epilepsy treatment in the DRC, but availability and accessibility remain challenges.26 Medication choices, in the DRC, vary based on affordability and clinician preference; no national data exist on preferred ASMs. Historically, phenobarbital, phenytoin, and ethosuximide were most common. Phenobarbital-phenytoin combination therapy was used for monotherapy-resistant seizures, while ethosuximide treated absence seizures. For status epilepticus, clonazepam was the medication of choice.
Currently, valproate is most preferred for both children and adults. For children, carbamazepine, clobazam, and clonazepam are also used. Adults receive carbamazepine and phenobarbital as well. Levetiracetam and lamotrigine are least used. ASM indications and dosing follow WHO recommendations (Table 2). For OAE, ivermectin is also indicated for 15 years in non-pregnant adults and children over 5 to treat onchocerciasis,27 however, seizure frequency was not reduced with this treatment.28 Overall, continued efforts are needed to improve ASM availability, accessibility, and evidence-based use for optimal epilepsy care in the DRC.
| Drugs | Indication | Required dosage | |
|---|---|---|---|
| Children | Adults | ||
| Sodium Valproate | A broad-spectrum anticonvulsant that can be used for focal or generalized seizure. Specifically indicated for absence, atonic and myoclonic seizures. Preferred drug for nodding seizures. Used by 14.7% of PWE |
Given twice daily Starting dose: 5–10 mg/kg/day Maintenance: 15–30 mg/kg/day |
Given twice daily Starting dose: 400 mg/day Maintenance: 400–2000 mg/day |
| Phenobarbital | Recommended by WHO as first-line AED for most seizure types, except absences. Cheap and readily available. Used by 74.6% of PWE |
Given once/twice daily Starting dose: 2–3 mg/kg/day Maintenance: 3–6 mg/kg/day |
Given once daily Starting dose: 60 mg/day Maintenance: 60–180 mg/day |
| Carbamazepine | Recommended for focal seizures and could be used for generalized seizures as well. Used by 27.4% of PWE |
Given twice daily Starting dose: 5 mg/kg/day Maintenance: 10–30 mg/kg/day |
Given twice daily Starting dose: 100–200 mg/day Maintenance: 400–1400 mg/day |
| Phenytoin | Recommended for some generalized seizures and status epilepticus. Used by 22.2% of PWE |
Given once/twice daily Starting dose: 3–4 mg/kg/day Maintenance: 8 mg/kg/day (max 800 mg/day) |
Given once/twice daily Starting dose: 150–200 mg/day Maintenance: 200–400 mg/day |
- Abbreviations: ASM, Anti-Seizure Medication; PWE, Patients with Epilepsy; WHO, World Health Organization.
5.2 Surgical indications in epilepsy
Surgical resection is generally the best treatment option for epilepsy resistant to pharmacotherapy after carefully weighing individual risks and benefits.29 Though national data are lacking, drug-resistant cases are estimated to comprise one-third of all epilepsy in Kinshasa.29 However, surgical treatment is not currently practiced in the DRC given the deficit in neurosurgical equipment and training.29 Neurosurgery remains in an early stage of development, with very few neurosurgeons for over 95 million inhabitants.5 Establishing surgical infrastructure and training multidisciplinary epilepsy surgical teams is critically needed to address the substantial burden of drug-resistant epilepsy.
6 ECONOMIC BURDEN
The economic burden of epilepsy management significantly impacts disease chronicity in low-resource settings like the DRC. Approximately 75% of people with epilepsy (PWE) lack health insurance globally.1 Thus, out-of-pocket medical expenditures risk major financial hardship for patients, driving treatment gaps and use of unconventional therapies. In Kinshasa, most PWE received discounted care at CNPP before 1990, covered by agreements between Congolese companies and CNPP. However, after 1990s looting and political unrest, most companies went bankrupt or offshored due to instability.5
Currently, PWE must self-finance care, despite minimal income (mostly under $2.15/day). Thus, many pursue traditional care over evidence-based treatments. Epilepsy care costs vary, and national data are lacking, but general estimates exist. Consultations cost ~$15 per patient, EEG ~ $80, and common ASMs sodium valproate and carbamazepine cost ~$45 and ~ $18 monthly, respectively. More expensive ASMs like levetiracetam cost ~$90 monthly. Widespread poverty hinders ASMs affordability long term. Improving epilepsy care access requires understanding associated costs and barriers. Though specific economic data are unavailable, the known poverty level underscores the need for affordable care to reduce epilepsy's socioeconomic burden in the DRC.
7 STIGMA
Limited epilepsy awareness in the DRC has bred misconceptions, stigmatizing the disease. Surveys in Ituri found many people believe epilepsy is hereditary, contagious, caused by spirits, or witchcraft.30, 31 This stigma impedes social integration, pursuing employment, education, and marriage.30 In many cases, the stigma results in profound isolation that erodes one's well-being.
Fallacies surrounding epilepsy and its source impact the conversation concerning appropriate treatment. The influence of the traditional healers in most DRC communities, however, remains very strong. According to Dusabimana et al, two traditional healers reported “We are capable to detect epilepsy with our powerful spirit that we have, that powerful spirit shows us the PWE and tells us what plant to administer (male traditional healer);” the female one added: Our powerful mind sends us to take the right plant to treat the evil spirit in the people (PWE). The same mind guides the way we administer this plant. There are medicines to chew and others to drink.”28 These inaccuracies undermine therapeutic environments for PWE.
Reducing stigma and misinformation requires gradually raising public awareness of evidence-based therapies, likely needing collaboration between traditional healers and health professionals. From 1965 to 1997, healers were requested to direct PWE to health centers for assessment and care, though with little success.30 However, growing willingness for collaboration has been observed. Increasing clinical access, alongside awareness campaigns, can eventually eradicate most stigma through promoting education and socio-political support. An important approach for the awareness campaign is to leverage the lived experiences of PWE, offering unique insights into the challenges they face. Disseminating these firsthand accounts fosters empathy and deepens understanding of the condition. Furthermore, these personal narratives can direct the development of more effective and inclusive solutions, ensuring that support and interventions are precisely tailored to the distinctive needs of people living with epilepsy. While deeply entrenched, change is possible with persistent, multifaceted efforts to reshape the epilepsy narrative and treatment landscape in the DRC.
8 CONCLUSION
This review has delved into the intricate issues surrounding epilepsy care in the DRC, including a high estimated prevalence and its connections to onchocerciasis. Moreover, it has highlighted the complex challenges, spanning from infrastructural limitations to economic and societal obstacles, which contribute to a significant treatment gap.
The prevailing poverty in the region severely restricts access to medications and evidence-based care, mainly due to the reliance on out-of-pocket expenses. This financial constraint creates barriers to accessing ASMs, the primary therapeutic resource. The absence of epilepsy surgical interventions, typically a highly effective treatment for localization-related epilepsy, further compounds these challenges. Furthermore, misconceptions surrounding epilepsy have a detrimental effect, fostering stigma and leading to the isolation of affected individuals, ultimately impacting their quality of life.
Considering these intricate challenges, the road to enhancing epilepsy care in the DRC is multidimensional, demanding a careful consideration of the WHO's Intersectoral Global Action Plan (IGAP) and the integration of strategies that align with the internal challenges of the DRC. IGAP outlines strategic objectives targeting improved access to care and treatment for individuals with neurological disorders, including epilepsy.32 The strategies embedded in IGAP, adapted to address the unique challenges of the DRC, include bolstering governance and policy, delivering adequate clinical care, ensuring comprehensive public health coverage for epilepsy, and fostering research and collaboration to stimulate innovation in the field.
A partnership between the Congolese Ministry of Health and LICOCE has the potential to establish a standardized, evidence-based national policy to guide epilepsy care. Furthermore, the consolidation of efforts by the government, healthcare providers, and the local community can streamline the implementation of widespread epilepsy screening using diagnostic tools based on mobile apps,33 thereby enabling early detection. This collaborative effort can lead to the creation of a national epilepsy registry and surveillance system, furnishing essential data for monitoring prevalence, treatment outcomes, and emerging challenges.
Further future directions include increasing funding and promoting local research initiatives to investigate the unique pathophysiology of epilepsy in the DRC population; subsidizing the costs of anti-ASMs to improve treatment affordability and establish state-of-the-art healthcare infrastructure, including surgical facilities; training healthcare professionals in the use of culturally appropriate neuropsychological tools to enhance epilepsy comorbidity assessment and treatment; launching a national awareness campaign to dispel myths and reduce stigma surrounding epilepsy; leveraging the influence of traditional healers and the inclination of patients to seek traditional remedies by integrating them into the formal healthcare system. This can be achieved through basic training in epilepsy care and fostering referrals to specialized clinics.
These carefully crafted and precise metrics are designed to provide essential guidance for driving substantial improvements in epilepsy care in the DRC. By implementing these measurable benchmarks and objectives, the goal is to formulate accessible and effective epilepsy care, ultimately leading to a significant positive change in healthcare delivery.
AUTHOR CONTRIBUTIONS
Tshibambe N. Tshimbombu, B.A: designed the study; assembled the entire team of authors; participated in article selection needed for reference; edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Minkyung Shin, BSc: edited and revised the manuscript; approved the manuscript to be published. Thomas Thesen, PhD, FRSB: provided critical content information; edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Luabeya Mesu'a Kabwa, MD, PhD: provided critical content information; participated in article selection needed for reference; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Karen Blackmon, PhD, ABPP-CN: edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Jean Marie Kashama wa Kashama, MD: edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Barbara C. Jobst, MD: edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published. Dominique Fontaine, B.A: editing the manuscript; approval of the manuscript to be published. Immanuel Olarinde, MD student: editing the manuscript; approval of the manuscript to be published. Daniel Okitundu-Luwa E-Andjafono, MD, PhD: provided critical content information; participated in articles selection needed for our reference; edited the manuscript; revised the manuscript critically for important intellectual content; approved the manuscript to be published.
ACKNOWLEDGMENTS
We wish to express our gratitude for including Table 2, which has been adequately cited and reproduced from “Comprehensive Management of Epilepsy in Onchocerciasis-Endemic Areas: Lessons Learnt from Community-Based Surveys.” Our utilization of this table aligns with the manuscript publisher's policy, which permits the free reproduction of figures and tables from their open-access articles, without the need for formal written permission from the publisher or the copyright holder.
FUNDING INFORMATION
None.
CONFLICT OF INTEREST STATEMENT
We have collectively declared no conflicts of interest, financial or otherwise, that might introduce any form of bias or influence into the content presented. We underscore our unwavering dedication to maintaining the integrity and impartiality of the research findings conveyed within this manuscript. We have diligently adhered to ethical standards and guidelines, ensuring that our research process and its outcomes remain free from any potential conflicts that could compromise the objectivity of the work.
ETHICS STATEMENT
We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.
