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1 Permanent address: Avenida 1 De Mayo # 40b-54, Bogotá, Colombia.
Affiliations
Hospital Occidente de Kennedy, Servicio de Neurología, Bogotá, ColombiaHospital Ruber Internacional, Servicio de Neurología, Programa de Epilepsia, Madrid, Spain
Hospital Ruber Internacional, Servicio de Neurología, Programa de Epilepsia, Madrid, SpainHospital Universitario Ramón y Cajal, Servicio de Neurología, Madrid, Spain
Hospital Ruber Internacional, Servicio de Neurología, Programa de Epilepsia, Madrid, SpainHospital Universitario Clínico San Carlos, Servicio de Neurología, Madrid, Spain
About 80% of patients with epilepsy reside in low-middle income countries (LMIC).
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Over 75% of patients with epilepsy from LMIC do not receive treatment at all.
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Epilepsy should be considered a public health priority.
Abstract
Epilepsy is a global disease with an unequal distribution. About 80% of the affected individuals reside in low and middle income countries. The incidence and prevalence of epilepsy in low income populations is higher than in the rest of the world, this is partly explained by some risk factors such as head trauma, perinatal injury and CNS infections, which are more common in poor regions, especially in rural areas. Epilepsy is considered a treatable condition with high rates of therapeutic response. About three fourths of patients achieve control of the disease with the use of antiepileptic drugs, however, despite this benign prognosis, over 75% of patients from low income populations do not receive treatment at all. The cultural beliefs, the inequity in the distribution of public health services, the inadequate supply of antiepileptic drugs, the low number of neurologists involved in the attention of epilepsy, and the social stigma, are the main reasons that increase the treatment gap and the burden of disease in low income populations with epilepsy. We conducted a narrative review regarding the epidemiology of epilepsy in low income populations by searching PubMed, EMBASE, Google Scholar and thoroughly examining relevant bibliographies. This review aims to summarize the main epidemiological aspects of epilepsy in LMIC, emphasizing on incidence, prevalence, socio-demographic profile, TG, social stigma and QoL.
]. Although epilepsy is a global disease, it has an unequal distribution, and about 80% of the affected individuals reside in low and middle income countries (LMIC) [
]. Epilepsy is considered a treatable condition with high rates of therapeutic response. About 70% of patients with epilepsy are controlled with antiepileptic drugs (AED) [
]. However, despite this apparently “benign” prognosis, 73.3% of patients with active epilepsy in rural areas of LMIC do not receive treatment or receive it inappropriately [
]. This concept is known as epilepsy treatment gap (TG), and is associated with several psychosocial complications such as impaired quality of life (QoL), social stigma and labor discrimination [
]. The TG is also associated with higher rates of mortality, and in some LMIC of Africa, the standardized mortality ratio can be up to six times higher than in developed countries [
According to the global burden of disease study (GBD) published in 2010, which intended to describe the collective disease burden produced by all diseases around the world, epilepsy represents around 0.7% of the overall global burden of diseases measured in disability adjusted life years (DALYs) [
Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.
]. DALYs are an indicator of burden of disease, and are composed by the measurement of years of life lost due to premature mortality (YLL) and years lived with disability (YLD). Epilepsy ranks as the 36th leading cause of DALYs globally, and in some LMIC of Latin-America and western Sub-Saharan Africa, ranks as the 21th and 14th leading cause of DALYs respectively [
Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.
]. Among neurological disorders, epilepsy represents the second most disabling disease as measured in YLD only surpassed by migraine, and in some LMIC of Latin America, ranks as the 9th leading cause of YLD [
Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.
]. The World Bank ranks epilepsy in the top five of all non-communicable diseases for cost-effectiveness in treatment. One study found that in some regions of sub-Saharan Africa and South East Asia, the availability in primary care of older AED (phenytoin and phenobarbital) with a coverage of 50%, could save 1360 annual DALYs per each million population [
]. Even though epilepsy is a treatable condition with a highly cost-effective treatment, there are several circumstances in LMIC that can perpetuate the TG and increase the burden of disease.
For all these reasons, epilepsy must be promoted as a “treatable disease without stigma”, especially in LMIC. This initiative has been implemented for more than a decade through the “Global Campaign against Epilepsy”, with the combined collaboration of the International League against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE), and the World Health Organization (WHO). We conducted a narrative review regarding the epidemiology of epilepsy in low income populations by searching PubMed, EMBASE, Google Scholar and thoroughly examining relevant bibliographies. This review aims to summarize the main epidemiological aspects of epilepsy in LMIC, emphasizing on incidence, prevalence, socio-demographic profile, TG, social stigma and QoL.
2. Incidence, prevalence and socio-demographic profile of epilepsy in LMIC
The incidence and prevalence of epilepsy in LMIC is higher than in the rest of the world. Fig. 1. The median lifetime epilepsy prevalence for developed countries is 5.8 per 1.000, whereas in rural areas of developing countries is 15.4 per 1.000 [
]. The difference of prevalence and incidence among high income countries and LMIC is partly explained by some risk factors such as head trauma, CNS infections and perinatal injuries, which are more common in poor regions, particularly in rural areas [
]. Traumatic brain injury (TBI) is a common cause of epilepsy. Some studies have shown an incidence of 180–250/100.000/year with higher values in individuals living in poor regions and in some LMIC such as South Africa [
]. The high incidence of TBI in those regions, could be the result of a poor transport infrastructure. It could also be the consequence of violent attacks related with armed conflicts [
]. Central nervous system infections are one of the main risk factors for seizure disorders, and in LMIC represents the second leading cause of epilepsy [
]. Among CNS infections, neurocysticercosis represents one of the most common causes of epilepsy in LMIC, particularly in rural areas where hygiene and sanitary conditions are precarious. For instance, a study performed in a rural area of Ecuador, showed that 33% of patients with epilepsy had serological and imagenological evidence of neurocysticercosis [
Community-based epidemiological investigations of cysticercosis due to Taenia solium: comparison of serological screening tests and clinical findings in two populations in Mexico.
]. Besides TBI and CNS infections, perinatal brain damage related to poor prenatal care and injuries during the labour, is one of the main risk factors for epilepsy in LMIC [
]. A study performed in Tanzania showed that adverse perinatal events were strongly associated with epilepsy (OR 14.9, 95% CI 1.4–151.3). The authors of the study suggested that epilepsy can be prevented in a significant proportion of children with better antenatal and perinatal care [
Fig. 1Differences in prevalence, incidence and treatment gap in epilepsy among several countries. The information shown only includes data from some studies selected by the authors [
]. The color of the circles represents the World Bank country classification according to the gross national income per capita; red = low income, yellow = lower middle income, green = upper middle income, blue = high income. P = prevalence of active epilepsy, number of cases per 1000 people. I = Incidence of epilepsy, number of new cases per 100,000 people/year. TG = treatment gap expressed as a percentage. ≠ No data.
Mortality in epilepsy is a cause of growing concern; compared to the general population, patients with epilepsy have up to a threefold increase in mortality. In these cases death frequently is unwitnessed and no other causes can be identified, a situation referred to as sudden unexpected death in epilepsy (SUDEP) [
Premature mortality of epilepsy in low- and middle-income countries: a systematic review from the Mortality Task Force of the International League Against Epilepsy.
]. It is clear that epilepsy is associated with premature mortality, especially in children and in LMIC, with values of standardized mortality ratio that can be up to six times higher in poor regions than in developed countries [
Premature mortality of epilepsy in low- and middle-income countries: a systematic review from the Mortality Task Force of the International League Against Epilepsy.
]. Some studies have shown that a large proportion of epilepsy-related deaths can be prevented, especially those attributable to falls, drowning, burns, and status epilepticus [
Premature mortality of epilepsy in low- and middle-income countries: a systematic review from the Mortality Task Force of the International League Against Epilepsy.
]. These findings are not exclusive to people with low incomes; for example, a recent study performed in Denmark showed that patients with epilepsy studied less than the general population, had higher unemployment rates, and were more likely to be single or divorced [
]. One of the main differences is based on educational profile, as the illiteracy rate of patients with epilepsy from some LMIC could be much higher than the illiteracy rate of epilepsy patients documented in European populations with strong economic resources [
]. This sociodemographic profile is directly related to the stigma. Where epilepsy is heavily stigmatized, the social and economic morbidity of the disease promotes a vulnerable condition characterized by limited opportunities for education, employment, and marriage [
] aimed to describe the clinical features, the causes and the consequences of active epilepsy in those regions. The authors found that 51% of the patients evaluated were children and 69% of seizures began in childhood. Status epilepticus occurred in 25% and only 36% received antiepileptic drugs. The main causes of active epilepsy were adverse perinatal events, acute encephalopathy and head injury. The main comorbidities were malnutrition, cognitive impairment and neurologic deficit. The main consequences were lack of education, being unmarried or unemployed, burns and head injuries. Therefore, this study currently reflects the reality of the epilepsy care in poor regions of the world [
]. In epilepsy, the TG is highly variable, and depends mainly on the economic income of the population studied. For example, one study found that the TG estimated from active epilepsy prevalence was less than 10% in some high or middle high income countries such as Norway, United Kingdom, United States of America, and in some selected populations from Argentina, Brazil and France. On the other hand in LMIC such as Ethiopia, Nigeria, Pakistan, Togo, Uganda and rural China, the TG was higher than 95% [
Disparities in health care systems exist even in LMIC, and some studies have found significant differences in the epilepsy TG within the same population, with higher values towards rural areas. For example, in India, the TG ranges from 40 to 90% in rural areas compared to 22–50% in suburban and urban populations [
]. In general, the TG is over 75% in low income countries and over 50% in lower-middle and upper-middle income countries, while in high-income countries is less than 10% [
] (Table 1). The inequality in the distribution of public services favoring urban areas as well as the differences in the health service within public and private sector of LMIC, are within the main reasons that increase the TG and the burden of disease, especially in rural areas. For example, some studies have found that in South Africa, the private health care system serves approximately 15% of the population, but it accounts for 57% of health care expenditure. Those studies also found that the private sector has a greater proportion of specialists with an unequal distribution of technological facilities; at the time of the study, 75% of neurologists were employed entirely within the private sector and 73% of EEG machines were owned by the private sector [
]. Another important limitation in LMIC, is the number of neurologists involved in epilepsy care. According to the Atlas of epilepsy care in the World, the epileptologists provide care to people with epilepsy in only 55.6% of low-income countries, whereas in high-income countries the availability is about 88.6% [
]. Specific training in epileptology is also an unmet need, and in some regions of Africa and Eastern Mediterranean, the opportunity for training exist only in 3–7% of them [
]. Additionally, the public sector prices for some generic AEDs such as carbamazepine and phenytoin are 5 and 18 times higher than international reference prices, with the highest prices found in the lowest-income countries [
Table 1Main causes of epilepsy treatment gap in low income populations. The causes are multifactorial and can be divided in two categories: health care system and patient-related reasons.
In some LMIC, traditional beliefs about the causes of epilepsy lead to stigma and contribute to the TG. In those populations, patients are often not aware that their disease can be potentially treated with AEDs, and instead they seek help through alternative medicine practitioners and traditional healers. The reasons for TG in epilepsy are specific for each population and can vary according to the cultural beliefs and the socioeconomic situation. For example, one study conducted in Kilifi, Kenya, found that the main risk factors associated with epilepsy TG were: traditional religious beliefs, negative attitudes towards biomedical treatment, living far away from health facilities, the cost of AEDs, learning difficulties, long lasting epilepsy and focal seizures [
]. Regarding this, another study in India found that financial issues, spiritual thoughts about epilepsy and non-availability of AEDs were the main reasons for AEDs discontinuation [
Evaluation of socio-economic factors causing discontinuation of epilepsy treatment resulting in seizure recurrence: a study in an urban epilepsy clinic in India.
All the efforts that need to be applied to reduce the TG must consider the cultural beliefs of each population as well as the local resources and priorities of each individual communities [
]. According to the Global Campaign against Epilepsy, the TG in developing countries can be improved through educational interventions focused on patients and health providers, including traditional healers. The aim of this is to increase the knowledge of diagnosis and management of the disease, promoting the concept of epilepsy as a treatable condition [
]. It also needs to include an anti-stigma intervention and a self-management education program, which empowers patients to participate more actively in managing their care. Some studies have found that these educational interventions can improve epilepsy knowledge, QoL, seizure frequency and AED adherence [
The psychoeducational program for children with epilepsy and their parents (FAMOSES): results of a controlled pilot study and a survey of parent satisfaction over a five-year period.
]. All of these interventions have been addressed for more than 15 years through the “Global Campaign against Epilepsy”, with the combined collaboration of the ILAE, IBE, and the WHO [
] (Fig. 2). One of the most important results of the campaign, are the demonstration projects. The aim of these projects is to reduce the TG and the burden of disease through the implementation of comprehensive models for epilepsy care and the free supply of AEDs in LMIC. A demonstration of this is illustrated by a project conducted in rural China that could reduce the TG for active epilepsy from 62.6% to 49.8% in a 4 years period [
Fig. 2Structure and implementation phases of the Global Campaign Against Epilepsy between 1997 and 2013. The ultimate objective is to ensure that governments and healthcare providers place epilepsy on their health and development agenda in order to formulate and implement cost-effective responses to epilepsy. The figure shows the years of implementation and the main activities carried out during each of the phases. ** Demonstration projects were implemented in Senegal, Zimbabwe, Brazil and China. CREST = Collaborative Research on Epilepsy Stigma Project.
Data were obtained from: de Boer HM, Moshé SL, Korey SR, et al. ILAE/IBE/WHO Global Campaign Against Epilepsy: a partnership that works. Curr Opin Neurol, 2013; 26: 219–225′.
Untreated patients with epilepsy face several psychosocial and medical complications. Even though epilepsy is a condition with high rates of therapeutic response, in poor regions of the world a considerable proportion of patients do not receive treatment. This concept is the basis of the “paradox of epilepsy” which was described by Kale in 2002 [
]:“Epilepsy has been around for >4000 years. Fifty million people have it in the world. Five hundred million are closely involved as family and colleagues. Treatment has been available for 90 years. Three fourths have treatable epilepsy and can lead near-normal lives, yet 85% do not get any treatment at all”.
However, with the current knowledge and therapeutic armamentarium, the paradox of epilepsy could be partially modified.
4. Diagnostic limitations and availability of epilepsy surgery
Efforts to investigate the underlying cause of epilepsy in LMIC may be frustrating. According to the Atlas of epilepsy care in the World published in 2005, long-term video-EEG monitoring was available in only 21.7% of low-income countries compared with 77.1% of high income countries and MRI was available in only 20.6% of some LMIC from Africa [
]. The value of the EEG must be considered in the context of its technical quality and the experience of the reader to avoid overinterpretation or misdiagnosis [
]. Although the diagnostic methods previously mentioned are useful in the clinical approach of a patient with a seizure disorder, the diagnosis of epilepsy is mainly clinic. However, as we mentioned before, the low number of neurologist and epileptologist involved in the epilepsy care of patients from LMIC is an important limitation for an accurate diagnosis [
]. Taking into account the diagnostic limitations and the low number of neurologist and epileptologist involved in epilepsy care in LMIC, the misdiagnosis in those regions could be much higher.
Epilepsy surgery in LMIC is also an unmet need. It is clear that 20–30% of epilepsy patients will not respond to AEDs [
]. In those patients, a surgical approach should be considered, however, the availability of epilepsy surgery programs in LMIC is very low, even though it has been proved to be feasible and cost-effective [
], for the year 2005, epilepsy surgery was not available in 87% of low-income countries. In 2008, Asadi-Pooya and Sperling proposed some strategies for surgical treatment of epilepsies in developing countries [
]. Those strategies were focused on: 1) promoting the training in epileptology, 2) the development of health politics to ensure access to diagnostic methods (brain MRI and long-term video-EEG monitoring) and 3) the development of realistic presurgical protocols according to the socioeconomic situation [
5. Epilepsy beyond seizures: social stigma and quality of life
The stigma is a social process characterized by exclusion, rejection, blame, or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group identified with a particular health problem [
]. The stigma associated with epilepsy is common in many cultures and represents one of the main factors that affect the QoL of patients and their families, particularly in LMIC [
]. As we mentioned before, the stigma in epilepsy promotes a specific socio-demographic profile which is characterized by limited opportunities for education, employment, and marriage [
]. Some authors consider that stigma in epilepsy can be divided in two categories: the felt stigma (internal stigma or self-stigmatization) and the enacted stigma (external stigma imposed by other people) [
]. Several studies have found that in LMIC, enacted stigma is the most common form of stigma found in epilepsy patients, which means that is imposed by other persons, whereas in high income countries predominates the self-stigmatization [
]. Cultural beliefs stigmatize people with negative stereotypes which are characterized by social and personal attributes that are not accepted by the community. In the case of epilepsy, despite the large clinical heterogeneity, the general perception of people creates a negative stereotype and considers epilepsy as a disabling disease that is exclusively associated with convulsive seizures [
Another important issue to understand epilepsy as a condition that goes beyond seizures is the QoL. Quality of life is a broad concept that is somewhat subjective; it is defined by the World Health Organization as the perception that an individual has of his place in existence, in the context of culture and system securities in which they live, and in relation to their goals, expectations, standards, and concerns [
]. The QoL in epilepsy patients has been evaluated for more than 20 years with the application of different questionnaires that allow standardization of this concept. In recent years, QoL has become one of the main outcomes of therapeutic interventions for epilepsy patients [
]. In people with epilepsy, especially in those living in low income populations, evidence suggests that psychosocial aspects (psychological distress, loneliness and stigma) as well as psychiatric comorbidity could be more important in the perception of QoL than other clinical variables such as seizure frequency and side effects of AEDs [
]. For example, a study conducted in a low income population from Bogota, Colombia, found that the QoL in patients with epilepsy is determined primarily by depression, severe daytime sleepiness, etiology of epilepsy (structural/metabolic etiology) and the type of therapeutic response to antiepileptic drugs [
]. For all these reasons, epilepsy must be considered as a syndrome, in which seizures are one of the main symptoms, but not the only one, and there are multiple associated conditions such as psychosocial dysfunction and psychiatric comorbidity, which are common, disabling, and possibly has a more profound effect on patient́s perception of QoL [
All the aforementioned topics are critical to understand the epidemiology of epilepsy in low income populations, however, we believe that future researches should be focused on two aspects: the prevention of epilepsy and the reduction of TG. As mentioned before, the vast majority of epilepsies in low income populations are the result of traumatic brain injury, perinatal injuries or CNS infections, these are preventable circumstances. Future studies should be focused on reducing the incidence and burden of disease through comprehensive models of prevention. The TG is another important issue. As we mentioned before, nearly 75% of patients with active epilepsy in rural areas of LMIC do not receive treatment or receive it inappropriately. According to the Global Campaign against Epilepsy, the TG in developing countries can be improved through educational interventions focused on patients and health providers. A good example of this initiative are the demonstration projects, which have been conducted in several countries such as Senegal, Zimbabwe, Brazil and China. We believe that more demonstration projects are needed, since they represent the cornerstone for the development of new health policies.
7. Conclusions
Epilepsy is a global disease with an unequal distribution. About 80% of the affected individuals reside in low and middle income countries. The higher prevalence and incidence of epilepsy in low income populations could be the result of some specific risk factors. Based on this data, it is urgent to promote prevention strategies focused on pregnancy complications, perinatal injuries, CNS infections and head trauma. Even though epilepsy is a treatable condition with high rates of therapeutic response, in poor regions of the world more than 75% of patients do not receive treatment. The high treatment gap in LMIC can be explained by cultural beliefs, inequity in the distribution of public health services, poor health system infrastructures and inadequate supplies of antiepileptic drugs. The consequences of this are the appearance of psychosocial and medical barriers that promote less opportunities for education and employment, preventing the achievement of a full social life. In an effort to reduce this gap, continuous supply of AEDs needs to be secured in an environment where specific educational programs directed both to patients and health providers are developed. For all these reasons, epilepsy should be considered a public health priority, and therefore governments must provide a comprehensive model of care focused on acceptability, treatment, services and prevention of epilepsy worldwide, especially in low income populations.
Disclosure of conflicts of interest
No conflicts of interest exist.
References
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Estimation of the burden of active and life-time epilepsy: a meta-analytic approach.
Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.
Years lived with disability (YLDs) for 1160 sequelae of 289 diseases and injuries 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010.
Community-based epidemiological investigations of cysticercosis due to Taenia solium: comparison of serological screening tests and clinical findings in two populations in Mexico.
Premature mortality of epilepsy in low- and middle-income countries: a systematic review from the Mortality Task Force of the International League Against Epilepsy.
Evaluation of socio-economic factors causing discontinuation of epilepsy treatment resulting in seizure recurrence: a study in an urban epilepsy clinic in India.
The psychoeducational program for children with epilepsy and their parents (FAMOSES): results of a controlled pilot study and a survey of parent satisfaction over a five-year period.
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