The authors have declared that no competing interests exist.
In the second in a series of six articles on packages of care for mental health disorders in low- and middle-income countries, Caroline Mbuba and Charles Newton discuss treatment for epilepsy.
Epilepsy is the most common chronic neurological disorder, affecting over 65 million people worldwide, of whom 80% are estimated to live in low- or middle-income countries (LMICs).
Anti-epileptic drugs are very effective in controlling seizures, but most people with epilepsy in LMICs do not receive appropriate treatment.
This “treatment gap” is influenced by factors such as limited knowledge, poverty, cultural beliefs, stigma, poor health delivery infrastructure, and shortage of trained health care workers.
Several studies implementing interventions at the community level (for example, training programs for primary health care workers) have successfully improved the identification of people with epilepsy and reduced the treatment gap.
The sustainability of these interventions needs to be addressed, however, and efforts must be made to ensure a continuous supply of anti-epileptic drugs.
Epilepsy is one of the most common and widespread neurological disorders. Recent estimates suggest that it accounts for 1% of the global burden of disease
The World Health Organization (WHO) estimates that 80% of PWE live in LMICs. The incidence and prevalence of epilepsy are thought to be higher in LMICs than in high-income countries (HIC)—the median prevalence in LMICs is 9.5/1,000 compared to 8/1,000 in Europe, although the prevalence varies widely among countries
The International Classification of Disease (ICD) 10 diagnostic criteria for epilepsy are given in
Benign childhood epilepsy with centrotemporal EEG spikes
Childhood epilepsy with occipital EEG paroxysms
Attacks without alteration of consciousness
Simple partial seizures developing into secondarily generalized seizures
Attacks with alteration of consciousness, often with automatisms
Complex partial seizures developing into secondarily generalized seizures
Benign:
Myoclonic epilepsy in infancy
Neonatal convulsions (familial)
Childhood absence epilepsy
Epilepsy with grand mal seizures on awakening
Juvenile:
Absence epilepsy
Myoclonic epilepsy [impulsive petit mal]
Nonspecific epileptic seizures:
Atonic
Clonic
Myoclonic
Tonic
Tonic-clonic
Epilepsy with:
Myoclonic absences
Myoclonic-astatic seizures
Infantile spasms
Lennox-Gastaut syndrome
Salaam attacks
Symptomatic early myoclonic encephalopathy
West's syndrome
Epilepsia partialis continua
Epileptic seizures related to: alcohol, drugs, hormonal changes, sleep deprivation or stress
Epilepsies and epileptic syndromes undetermined as to whether they are focal or generalized
Although seizures are its most overt manifestations, epilepsy is associated with significant psychological
In this article, we focus on the management of epilepsy in LMICs. We review the evidence from LMICs on the efficacy of treatments and delivery of interventions. Because that evidence is often limited, we also refer to systematic reviews, meta-analyses, and key trials from HICs where appropriate. On the basis of this review, we propose a package of care—a combination of interventions aimed at improving the recognition and management of conditions to achieve optimal outcomes—for epilepsy.
The evidence for most aspects of the management of epilepsy is poor in both high- and low-income settings (
Epilepsy Management | HICs | LMICs |
Detection and diagnosis | Screening questionnaires |
Screening questionnaires |
AEDs | Systematic review of initial monotherapy in adults with partial-onset seizures (carbamazepine, phenytoin, and valproic acid), children with partial-onset seizures (oxcarbazepine), and elderly adults with partial-onset seizures (gabapentin and lamotrigine) |
RCTs of carbamazepine and phenobarbital in Ecuadorian |
Surgery | Meta-analysis to identify prognostic indicators of seizure remission after surgery |
Overview of more than 1,000 operations for epilepsy in India |
Ketogenic diet | Systematic review of trials of the ketogenic diet |
Ketogenic diet |
Psychosocial and psychoeducational interventions | RCT of a 2-d psychoeducational treatment program |
Nonrandomized intervention study that provided leaflets about drug information to Taiwanese adults with epilepsy |
Cognitive behaviour therapy | — | RCT of acceptance and commitment therapy in South Africa |
Relaxation therapy | Two-phase experimental group investigation of a contingent relaxation treatment program |
— |
Abbreviations: RCT, randomized controlled trial.
Much epilepsy in the world is not identified, particularly in LMICs, and thus PWE may not benefit from treatment. The diagnosis of epilepsy is based on clinical history alone, but since patients may become unconsciousness during seizures, an independent observer is often necessary. In HICs misdiagnosis occurs in 5%–30% of cases
Because the cause of epilepsy is often undetermined, and in most cases the epileptogenic focus cannot be removed, anti-epileptic drugs (AEDs) are used to control seizures. In HICs, AEDs may be considered if the person has had seizures within the past 2–5 y (active epilepsy), but in many LMICs AEDs are only often recommended in PWE with a seizure in the past year. AEDs are very effective in controlling seizures: 75% of those treated may become seizure free; 20%–30% of PWE have spontaneous remission of seizures without treatment
Few randomized trials have compared the efficacy and effectiveness of these first-line AEDs, and most of these trials were conducted in HICs. In a recent review by the International League Against Epilepsy (ILAE), evidence for the efficacy and effectiveness of AEDs as initial monotherapy was found only in adults with partial-onset seizures (carbamazepine, phenytoin, and valproate), children with partial-onset seizures (oxcarbazepine), and elderly adults with partial-onset seizures (gabapentin and lamotrigine)
Surgical removal of the epileptic focus is the only cure for epilepsy. Palliative procedures can also be performed. Surgery requires a thorough evaluation to identify the epileptic focus and the relationship of this focus to other functionally important areas of the brain (for example, the speech centre). A recent meta-analysis identified factors associated with seizure remission following surgery (
This technique is proposed for the treatment of refractory epilepsy and for the treatment of PWE who are not candidates for surgical treatment. It is effective in treatment of epilepsy patients with partial seizures
Although seizures cannot be prevented by lifestyle changes alone, PWE can nevertheless make changes that improve their lives and give them a sense of control. For example, although many PWE do not know the precipitants for their seizures, inadequate sleep, food allergies, alcohol, smoking, and flashing lights may trigger seizures in some patients and can be avoided. Similarly, exercise is important for many aspects of epilepsy
Psychological interventions such as psychotherapy, individual, group, or family counseling, progressive relaxation therapy, and cognitive behaviour therapy have all been used in epilepsy (
Delivery of efficacious interventions in LMICs can only be achieved if PWE are correctly identified. Unfortunately, the symptoms of some types of epilepsy (for example, hallucinations) may not be recognized as part of an illness, particularly in LMICs where epilepsy is interpreted within traditional belief systems. Furthermore, in LMICs, trained personnel for the detection and management of epilepsy and facilities for investigations of underlying causes are scarce
Step | How | By Whom | In What Settings |
Increasing demand for the package | Advocacy campaign with the message: “Epilepsy can be controlled” |
Patients and support groups; Community health workers; Nurses and physicians; Traditional healers; Public health personnel |
Community meetings; Schools; Media, e.g., radio, newspapers; General practice; Homesteads |
Increasing access to the package | Making AEDs available in health facilities |
Ministries of Health |
Primary health centres; Private clinics; Hospitals |
Improving recognition of the disorder | Community-based and practice-based screening to identify the patients and causes; Clinical history; Neurological examination; Examination of blood AED levels and parasitic infections |
Health care workers |
Community; Primary health centres; Maternal and child health clinics; District General Hospitals; Referral hospitals |
Initiation of evidence-based treatments | Supply of first-line AEDs |
Health care workers with license to prescribe AEDs | Primary health centres; Private clinics; Hospitals |
Managing serious or complex cases | Referral to other centres with specialist resources |
Specialist health care workers | Centres with medical staff with expertise in epilepsy |
Achieving optimal outcomes | Increasing AED adherence to reduce seizures, e.g., adherence management until full control achieved for at least 2 y |
Health care workers |
Primary health centres; Private clinics; Hospitals; Homesteads |
Addressing impacts on other health/social outcomes | Improving quality of life by, for example, psychosocial counseling of the family and PWE |
Health care workers |
Primary health centres; Private clinics; Hospitals; Homesteads; Counseling centres |
One of the factors contributing to the treatment gap in epilepsy in LMICs is the lack of a continuous and affordable supply of AEDs
Education of PWE and caregivers about epilepsy is important for several reasons. First, PWE with limited knowledge of epilepsy are at increased risk of the complications of seizures, such as fractures, burns, and accidental death
Although psychoeducational interventions tested in randomized controlled trials in HICs significantly improved knowledge and coping with epilepsy and decreased seizure frequency in HICs (
Patient support groups are found in many countries and play an important role in educating PWE and their caregivers, as well as in advocacy (
Public education is generally advocated as the best method to reduce the stigma attached to conditions such as epilepsy, but interventions need to be based upon qualitative and quantitative assessments to identify the causes of stigma in each region
The Global Campaign Against Epilepsy, a partnership between the WHO, ILAE, and the International Bureau for Epilepsy was launched in 1997 to improve the acceptability, treatment, services, and prevention of epilepsy worldwide
There are few specialists, particularly neurologists, in LMICs
Despite important advances in the understanding and treatment of epilepsy, many communities in LMICs still believe that epilepsy is supernatural or sacred and is associated with possession, impurity, contagion, heredity, and madness. In many parts of Africa and Asia, notions about epilepsy are rooted not in a medical model but in a spiritual model
Traditional healers live within the community and know the communities' perceptions of ill health. Their concentration is much higher in many populations than medical staff
Acceptance of epilepsy treatment may be markedly improved by integrating it into existing health care services. Mental health services are particularly important in LMICs since there are more psychiatrists than neurologists and PWE often have considerable psychiatric comorbidity. Experience in both Kenya and Malawi has shown that although epilepsy care can be successfully provided in LMICs, it is much harder to sustain it when it is not integrated into such services
Epilepsy services could also be improved in the community through approaches such as “extension services” (satellite clinic model) of apex institutions and collaboration with other organizations (
Epilepsy, one of the most common neurological conditions, is under-resourced and undertreated in LMICs. A large number of people have significant morbidity and mortality because of the failure to identify cases, difficulties with infrastructure, and the unavailability of suitable AEDs. Education of the community and of health care workers will improve the identification of PWE and thus reduce the treatment gap, provided inexpensive and reliable supplies of AEDs are available. Governments in LMICs need to recognize the burden of epilepsy and need to develop packages of care to reduce the disability associated with this condition in an efficient, sustainable, and equitable manner. We propose two packages of care based on the availability of resources (
Low Resourced Settings | High Resourced Settings |
Epidemiological surveys; Key informants such as community health workers and teachers trained in identification | Primary health care workers, doctors, and neurologists trained in identification and diagnosis |
Nurses and clinical officers trained in diagnosis | Specialists in epilepsy |
Educational and psychoeducational interventions | Educational and psychoeducational interventions |
Limited choice of inexpensive AEDs; Continuous supply of AEDs; Generic formulations | Wide choice of AEDs |
Limited services for epilepsy surgery | Services for epilepsy surgery; Ketogenic diet |
Health care workers trained in psychological support and counseling | Health care workers trained in psychological support and counseling |
Advocacy by NGOs | Advocacy by NGOs |
This paper is published with permission of the Director of Kenya Medical Research Institute.
anti-epileptic drugs
electroencephalography
high-income countries
International Classification of Disease
International League Against Epilepsy
low- and middle-income countries
nongovernmental organization
people with epilepsy