Epilepsy in CHAD: Realities, constraints, and prospects

Abstract

Epilepsy is a significant public health problem. More than 50 million people worldwide live with epilepsy, and over three‐quarters of them are in low‐ and middle‐income countries. The situation in Chad regarding people with epilepsy is challenging to assess, starting from the shortage of scientific data, the inadequacy of technical facilities, the lack of human resources, and the inadequacy of government action. The Ministry of Health and Chadian Society of Neurology are looking forward to prioritizing epilepsy as well as improving the living conditions of persons with this disease.

The epilepsy treatment issue is also problematic. Most of the patients are either off treatment or under‐medicated. Few antiseizure medications (ASMs) are available, notably carbamazepine, phenobarbital, and valproic acid. Epilepsy remains little‐known and does not seem to be a priority for decision‐makers. We describe the current situation in Chad, to improve the conditions under which epilepsy is treated.

Plain Language Summary

Epilepsies is a chronic brain problem that is common in poorer settings. The daily lives of people with epilepsy are chaotic in Chad. The challenges are numerous, particularly those related to health infrastructures, due to the lack of adequate diagnostic means and the lack of neurologists. The cultural and language challenges, especially since epilepsy is still considered the devil's disease and the name differs according to the dialects. Stigmatization is also frequent and is often responsible for school dropout, refusal, or dismissal from work. Care and prevention are daily challenges that require government action. Social coverage is insufficient and almost absent in rural areas. It is urgent to prioritize epilepsy in future action plans and also to increase awareness of the conditions to overcome these challenges.

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Key points

• Epilepsy is mainly unknown and not much considered by decision-makers in Chad.
• The lack of specialists, insufficient social coverage, and stigma are realities that people with epilepsy experience daily.
• To improve the quality of care for people with epilepsy, urgent and concrete actions must be taken.
• Many aspects of epilepsy are ignored in Chad, especially since there are almost no publications.

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INTRODUCTION

Epilepsy is a significant public health problem. The World Health Organization (WHO) states that more than 50 million people worldwide live with epilepsy, and over three-quarters of them are in low- and middle-income countries. The risk of premature death among people with epilepsy has increased sixfold in these countries.¹

To provide a global response, the worldwide “Bringing Epilepsy out of the shadows” campaign initiated by WHO, International League Against Epilepsy (ILAE) and International Bureau for Epilepsy (IBE) has provided positive responses, notably in China, Ghana, Mozambique, Myanmar, and VietNam.² The Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) 2022–2031, adopted at the 75th World Health Assembly is also a concrete response to improve the quality of life of people with epilepsy. IGAP charts a concise path toward preventing and reducing the global burden of neurological disorders and associated disability. It aims to improve the functioning and quality of life of those with neurological disorders by strengthening policies, systems and services, raising awareness, reducing discrimination, and fostering research and innovation.³

The Chadian situation concerning people with epilepsy is challenging to assess, starting from the scarcity of data, the inadequacy of facilities, the lack of human resources and the inadequacy of government action.^4,5 This situation makes it difficult to assess the current state of affairs to come up with concrete, appropriate responses aimed at improving the quality of life of people with epilepsy.

Since 2020, the Chadian Society of Neurology (CSN) and the Chadian League against Epilepsy (CLE) have been raising awareness around the country, notably in the provinces of N'Djamena, Ouaddaï, and Mayo Kebbi Est. These efforts intend to provide a concrete response to the epilepsy challenges. With IGAP objectives, we hope to achieve and measure them through 10 global targets.

REALITIES

Health and epilepsy in Chad

Chad is a vast country of more than a million square kilometers, in the center of Africa, landlocked by six countries (Libya, Sudan, Republic of Central Africa, Cameroun, Nigeria and Niger) It is a low-income countries (LIC) and has suffered from war, famine, and corruption since its independence. The health system is pyramid-shaped, with three levels (central, intermediate, and peripheral). The overall health situation has improved over the last 20 years, notably the density of healthcare facilities and medical staff.⁵ Despite this improvement, Chad remains one of the poorest countries regarding healthcare systems.⁶

Neurology practice was little known in the country until 2019, when Chad had just two neurologists.⁴ By 2023, the number had risen to eight, of whom six currently work in hospitals in N'djamena (the capital), and the other two are on internships abroad. No neurology department exists, but units are available in the National Reference and Renaissance University Hospitals, and the Sino-Chadian Friendship Hospital.

Epilepsy is common but not a priority in Chad's health policy. The multisectoral plan for fighting and controlling non-communicable diseases 2017–2021⁷ included a section promoting the fight against epilepsy, but action has been taken in this area.

Epilepsy and lack of health infrastructure

Overall, the healthcare system lacks infrastructure.⁵ As epilepsy is not considered a priority, little action has been taken in recent years, apart from the granting of electroencephalography to certain hospitals in 2021. This donation is undoubtedly motivated by the COVID-19 situation. This pandemic has shown the importance of improving health infrastructure. In addition, new CT scanners will be deployed in the three universities' hospital centers.

The national health budget is often insufficient, and directed towards infectious diseases such as malaria and tuberculosis, as well as non-communicable diseases such as diabetes, cancer, and mental illness.⁷

CSN and CLE are actively working with the Ministry of Health to prioritize epilepsy as well, to improve the living conditions of people with the condition (Figure 1).

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Epilepsy in communities in Chad

Chad has different cultures, and over 99% of its inhabitants are believers. Epilepsy is labeled a supernatural disease in urban and rural areas. This belief is also sustained by widespread illiteracy and ignorance.⁸ These erroneous beliefs encourage the population to seek supernatural help from charlatans, marabouts, priests, pastors, or traditional-healers.

Epilepsy terminology

Chad is a mosaic of languages, with over 170 identifiers, spread across three of Africa's four language families: Afro-Asiatic, Nilo-Saharan, and Niger-Congo.⁹ Epilepsy is probably termed in each of these languages. To uncover the names of “epilepsy” in different dialects, we conducted a mini-survey via Google Form to general practitioners using a dedicated WhatsApp group. We were able to obtain 22 responses in 48 h. We have identified the term for “epilepsy” in 13 different languages, including “AMFITFIT” in Chadian Arabic, “CARAH” in Kanembou, “LILIRA” in Moussey and “PIPI” in Ngambaye (Table 1). All have similar explanations, such as “the person's fall,” “the falling bird,” or “trembling death.”

TABLE 1 Appellation breakdown by dialect.

Dialect	Arabe tchadien	Barma	Day	Dazaga	Kanembou	Kenga	Kim
Appellation	Amfitfit	Keupeupeute	Ning ou Konon	Chou-choua	Carah	Kpitpiti	Bourloum
Dialect	Moundang	Moussey	Ngambay	Sar	Sara kaba	Mongoh
Appellation	Makpeuh-Heuh	Lilira	Pipi	Kosso yel ou Dan ou Yel	Miyo	Damsil

Stigma and epilepsy

Several studies from Sub-Saharan Africa, with almost the same traditions, report intense stigmatization of people with epilepsy.^10,11 In our daily consultations and during accessible neurological consultation caravans, we come up against the same situation. Epilepsy is considered a transmissible disease, and it is often forbidden to touch the saliva, excrement, sweat, or smell of people with epilepsy, according to this false belief, could transmit the disease. Some patients have been dismissed from their jobs. At school, the situation is more than chaotic, as most people with epilepsy dropout.¹² In our survey, of 532 people with epilepsy including 208 children, 24 per cent of adults were not educated and 11% of school-age children were out of school.¹³ This high level of abstention is probably linked not only to stigmatization but also to the hyper-protective behavior of some parents, who refuse to take their children to school for fear of them having a seizure in class.

No studies have been conducted on stigma and epilepsy in Chad. We need to deepen the research, emphasis raising awareness, and improve the quality of care for people with epilepsy.

Lack of neurologists and uneven distribution

The country lacks neurologists. WHO recommends one neurologist for every 50 000 inhabitants, but Chad currently has just one neurologist for over 2 800 000 inhabitants. All neurologists work in the capital. However, since 2018, the number has risen from two to eight neurologists, a fourfold increase in 5 years. We hope that the number will increase further in the future, which is why measures must be taken to train more neurologists.

Insufficient social security coverage

In Chad, social security coverage is insufficient. Only the Caisse Nationale de Prévoyance Sociale¹⁴ is compulsory for all workers in the public and private sectors. However, members are confronted with enormous administrative hurdles before claiming entitlements. Health insurance is less widespread; only workers in critical sectors and international organizations benefit from it. In rural areas, although little known, the introduction of mutual health insurance schemes helps member families take care of their health.¹⁵ Most of the population is not covered by insurance.

Lack of prevention of the causes of epilepsy

Several etiologies can be prevented, including perinatal anoxic-ischemic, traumatic (road accidents), and cerebral infections.^16–19 Road accidents are commonplace in Chad, mainly in N'Djamena, the country's most populous city, with a clear predominance of cranioencephalic trauma.^20,21 On the recommendation of health personnel in 2014,²² the wearing of helmets was made compulsory by the government; however, the advent of terrorist attacks, notably that of the Grand Marche in July 2015,²³ prompted the government to ban the wearing of helmets. Of 532 people with epilepsy, cryptogenic and symptomatic causes were the most reported with 46.6% and 40.6%.¹³

Treatment issues

Most people with epilepsy in Chad are either drug-free or under-medicated. Few ASM are available, notably carbamazepine, phenobarbital, valproic acid, and benzodiazepines (diazepam, clonazepam, and midazolam).¹³ Other ASMs (Gabapentin, Pregabalin, Levetiracetam, Lamotrigine, and Topiramate) are sporadically available to order, but may not have marketing authorization.

Treating epilepsy remains difficult for healthcare staff and patients alike. People have difficulty paying for medical prescriptions because of exorbitant prices. In this context, we advise people with epilepsy and their families to form associations to defend their rights and, above all, to ask the government to help them with ASM.

The difficulty of etiological research and the lack of training healthcare professionals are obstacles to better management. Epilepsy surgery is not available. Public ignorance and poor management of epilepsy encourage patients and their families to consult elsewhere.

Epilepsy in the continuing education of healthcare professional

Since 2020, CSN and CLE have organized annual training courses on epilepsy management for medical students, general practitioners, pediatricians, and emergency physicians. This training has enabled many of them to improve their knowledge of epilepsy management (Figure 2). To update the knowledge of healthcare professionals to achieve IGAP objectives 2, on diagnosis, treatment, and care. Specifically to build the capacity of the health workforce, the CSN proposed to the Ministry of Public Health a continuing training course for provincial general practitioners on the management of epilepsy and other neurological disorders.

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PROSPECTS

Overall, much needs to be done to improve the quality of life of people with epilepsy in Chad. These actions must be part of government policy, as epilepsy is very prevalent and carries heavy socio-economic and cultural burdens. It is a significant public health problem. With a view to the applicability of the IGAP objectives, concrete measures need to be taken to raise awareness, improve the quality of care and develop preventive strategies to combat perinatal and postnatal events, neonatal and children infections, particularly malaria, which is endemic and the leading cause of death in children aged 0–5 years.²⁴

To carry out these actions, it is necessary to

• Strengthen training in epilepsy for healthcare staff.
• Create a national program to combat epilepsy.
• Make ASM available and more accessible to access, if possible, free of charge in rural areas.
• Help people with epilepsy organize themselves into associations and support their work.
• Pass laws to protect people with epilepsy from stigmatization and marginalization and to ensure that their rights are respected.

COMPARISON WITH OTHER SUB-SAHARAN AFRICAN COUNTRIES

The epidemiology of epilepsy is almost identical in sub-Saharan Africa. Prevalences are very high in these countries; etiologies are dominated by infections, notably parasitic (neurocysticercosis), although other infections are not negligible.^25,26 Cranioencephalic trauma also plays a role.¹³ Many patients remain untreated, and long-term adherence to treatment appears to be complicated. The particularity for Chad is that there is almost no published scientific data to date. Many aspects of epilepsy are ignored in this part of Africa.

CONCLUSION

Epilepsy is one of the most frequent neurological pathologies in developing countries, with numerous consequences (cognitive, neuropsychiatric, neurodevelopmental, and social disorders) that can lead to death. However, it remains little-known and does not seem to be a priority for decision-makers. We describe the current situation in Chad, intending to improve the conditions under which epilepsy is treated.

AUTHOR CONTRIBUTIONS

Conceptualization: Foksouna Sakadi, Cisse Amara. Data collection: Foksouna Sakadi, Anatole Balanmo, Kobada Babing-ne. Formal analysis and writing – original draft: Foksouna Sakadi. Writing – review and editing: Foksouna Sakadi, Madjirabe NC, Toure ML, Kamis D, Nderbe MC, Diponbe D, Lintel AF, Carlos ON, Desire N, Cisse A. Bibliography: Foksouna Sakadi, Kobada B., Anatole B.

FUNDING INFORMATION

No funding.

CONFLICT OF INTEREST STATEMENT

The authors declare no conflicts of interest.

DATA AVAILABILITY STATEMENT

The data were collected from publications, mini-surveys among medical staff, the Chadian Society of Neurology, and the Chadian league against epilepsy.

ETHICS STATEMENT

We have received ethics approval from the National Reference Teaching Hospital. 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.

References

Organisation mondiale de la neurologie; Charge mondiale de l'épilepsie et nécessité d'une action coordonnée au niveau des pays pour influer sur ses conséquences sanitaires et sociales et sensibiliser l'opinion publique; Rapport du secrétariat SOIXANTE‐HUITIÈME ASSEMBLÉE MONDIALE de LA SANTÉ. A68/12; 27 mars. 2015.

Organisation mondiale de la santé; Epilepsie 9 février 2023. Consulté le 03/11/2023 à 18h26mn. https://www.who.int/fr/news‐room/fact‐sheets/detail/epilepsy

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