The aim of this chapter is to compare information and data collected on epilepsy around the world and to find a means of comparing them so as to produce indications for further work.

Several authors in the preceding chapters have highlighted the national situation on epilepsy and epilepsy care. However, despite differences, it is important to define ways to overcome these discrepancies and to note the advancement of care and research that could enhance the care of people with epilepsy worldwide.

The past 10 years have been important for progress in epilepsy care, and many initiatives and much research have contributed to raise a lot of attention on the burden of epilepsy.

Although some traditional epidemiologic data reported in the chapters in this section do not show major changes in epilepsy course, several factors are contributing to change in the care and course of epilepsy worldwide. The main pillars for change could be identified in the following factors: (a) the Global Burden of Disease study and all the research done in the field of summary measures of the population’s health; (b) the World Health Organization (WHO), International Bureau for Epilepsy (IBE), and International League Against Epilepsy (ILAE) Campaign on Epilepsy, with the publication of detailed information in the WHO Atlas on Epilepsy in 2005; (c) the publication of the International Classification of Functioning, Disability, and Health (ICF) classification in 2001 and the shift from diagnosis alone to functioning and disability approach to health; and (d) the increasing attention on innovative methodologies to collect information for policy decision making. All these factors will be analyzed here so as to provide a means for future work at the country as well at international level.

The Global Burden of Disease (GBD) 2000 study was carried out by the World Bank in collaboration with the WHO and the Harvard School of Public Health. Three main goals were addressed: To provide information about nonfatal health outcomes, to develop unbiased epidemiologic assessment for major disorders, and to quantify the burden of diseases with a measure that could also be used for cost-effectiveness analysis. The GBS study provided the true magnitude of the long underestimated impact of neurologic disorders. With mortality indicators alone, mental and neurologic disorders have never been ranked in the top ten priority list of public health significance. Demographic changes and epidemiologic transition, as well as changes in family structure, are projecting the burden due to neurologic and psychiatric disorders to increase up to 15% of the global disease burden.¹⁵

There is a growing need to combine information on mortality and nonfatal health outcomes to represent the health of a population that reflects health expectancies and health gaps. Summary health measures can be used for comparing the health status of different populations and health of populations at different points of time, and for balancing priorities between fatal and nonfatal outcomes. These are measures that combine information on mortality and nonfatal health outcomes to represent the health of a particular population as a single number. The GBD study provided the DALY (Disability Adjusted Life Year), a measure that added disability to mortality in the evaluation of the burden of diseases. The allocation of limited resources for health care should be based on the relative importance (or burden) of different conditions to the health of the nation. Mortality as major public health indicator has had the effect of limiting the attention given to highly prevalent, seriously disabling but nonfatal disorders. Use of traditional measurement methods has led, in fact, to a serious underestimation of the relative importance of neurologic disorders worldwide, because they rarely cause death and because several of them produce severe and long-term disability but not death. The number of deaths does not take into consideration the nonfatal outcome of illness, and prevalence rates do not take into consideration the severity and duration of disability produced by a disease. There is also increasing attention being given to the shift from communicable diseases to chronic, noncommunicable diseases: The so-called “epidemiologic transition,” which is also related to the increase of life expectancy.

Diagnosis alone does not predict service needs, length of hospitalization, level of care, or functional outcomes. The occurrence of a disorder is not an accurate predictor of receipt of disability benefits, work performance, return to work, or likelihood of social integration. This means that if we use a medical classification of diagnosis alone (e.g., the International Classification of Diseases [ICD]) or the ILAE classification, we will not have the information we need for health planning and management purposes. Neurologic disorders contribute substantially to the overall disease burden of developed and developing societies, but this is generally underestimated by the public health community.²⁷

Epilepsy is one of the most common serious disorders of the brain, affecting about 50 million people worldwide. Epilepsy accounts for 1% of the global burden of disease; 80% of the
burden of epilepsy is in the developing world, where in some areas 80% to 90% of people with epilepsy receive no treatment at all.³⁰ It is clear that epilepsy is a major public health problem and that it is important to assess its burden as well its cost to persons and to societies so that health care priorities can be set in a rational way. To highlight differences, we analyzed common epidemiologic data as also reported in previous chapters and through literature assessment.

As stated in Epilepsy: Out of the Shadows background booklet, “The suffering and the disability caused by the disease are physical and psychosocial, is bringing a huge burden to people with epilepsy, their families and society at large.”⁹

The burden of epilepsy is also strongly associated with significant psychological and social consequences for everyday living. This has been clearly highlighted in the previous chapters of this section. People with hidden disabilities such as epilepsy are among the most vulnerable in any society. While their vulnerability may be partly attributed to the disorder itself, the particular stigma associated with epilepsy brings a susceptibility of its own. Stigmatization leads to discrimination, and people with epilepsy experience prejudicial and discriminatory behavior in many spheres of life and across many cultures.³¹

People with epilepsy experience violations and restrictions of both their civil and human rights. Civil rights violations, such as unequal access to health and life insurance or prejudicial weighting of health insurance provisions; withholding of the right to obtain a driving licence; and limitations to the right to enter particular occupations, certain legal agreements, and in some parts of the world even marriage, are severely aggravated by epilepsy. Discrimination against people with epilepsy in the workplace and in respect of access is not uncommon for many. Violations of human rights are often more subtle and include social ostracism, being overlooked for promotion at work, and denial of the right to participate in many of the social activities taken for granted by others in the community. For example, ineligibility for a driving licence frequently imposes restrictions on social participation and choice of employment.³¹

The problems related to provision of care and treatment of people with epilepsy are too complex to be solved by individual organizations; therefore, the three leading international organizations working in the field of epilepsy (the WHO, IBE, and ILAE) joined forces to create the Global Campaign Against Epilepsy. The campaign aims to provide better information about epilepsy and its consequences and to assist governments and those concerned with epilepsy to reduce the burden of the disorders. More than 90 countries worldwide have been involved in the campaign.³¹

Regional conferences have been organized in all WHO regions to raise awareness on the public health impact of epilepsy, and a questionnaire was developed in order to make an inventory of country resources for epilepsy worldwide. Regional reports were developed and the main result of this effort was the publication in 2005 of the Atlas of Epilepsy Care in the World. The Global Campaign also had some demonstration projects that consisted of assisting countries in the development of their national epilepsy programs. Much of the information about data comparability on epilepsy has been collected in the Atlas, and this chapter summarizes some of the main results.³⁰ This initiative and its results could be considered another pillar to analyze information on epilepsy from different countries in a different way. The results of the WHO/IBE/ILAE Campaign allow a detailed evaluation of differences between developed and developing countries in several epilepsy indicators.

Epidemiologic indicators needed to construct the diagram of each disease are several and can be listed as prevalence, incidence, mean age of onset, course, natural history, duration, severity breakdown, mortality, and impact of treatment. These indicators are the starting point for data comparison as well as for highlighting information gaps. Salient findings on incidence, prevalence, treatment gap, and socioeconomic data are reported in this chapter as they are crucial to highlighting country differences in the field of epilepsy. While data on incidence, prevalence, and treatment gap are available in several publications and are also reported in this section in detail, it is important to also report here some of the data that have been recently published in the WHO Atlas³⁰ that cover a broader spectrum of items and that are a useful indicator of epilepsy burden and care worldwide.

The number of people with epilepsy is high in most regions of the world, and 43,704,000 people with epilepsy are reported from 108 countries covering 85.4% of the world population. The mean number of people with epilepsy varies across regions: The prevalence per 1,000 population is 8.93 from 105 responding countries. It is 12.59 and 11.29 in the Americas and Africa, respectively, 9.97 in WHO South East Asia, 9.4 in the Eastern Mediterranean, 8.23 in Europe, and 3.66 in the Western Pacific.³⁰ The mean number of people with epilepsy per 1,000 population ranges from 7.99 in the high-income countries to 9.5 in the low-income countries.^6,7 The overall prevalence of epilepsy ranges from 2.7 to 41 per 1,000 population, though in the majority of reports the rate of active epilepsy is in the range 4 to 8 per 1,000.⁸ The prevalence of active epilepsy is generally lower in industrialized countries than in developing countries, which may reflect a lower prevalence of selected risk factors. In industrialized countries, the prevalence of epilepsy is lower in infancy and tends to increase thereafter, with the highest rate occurring in elderly people.⁸ Where available, age-specific prevalence rates of lifetime and active epilepsy from developing countries tend to be higher in the second (254 vs. 148 per 1,000) and third decades of life (94 vs. 145 per 1,000).¹ The differences between industrialized and developing countries may be mostly explained by the differing distribution of the risk factors and by the shorter life expectancy in the latter. Prevalence of epilepsy, as incidence, tends to be higher in men. Socioeconomic background has been found to affect the frequency of epilepsy reports in both industrialized and developing countries, in which prevalence rates have been shown to be greater in the rural compared with the urban context or in the lower compared with the higher socioeconomic classes.¹⁷

The annual incidence of unprovoked seizure is 33 to 198 per 100,000, and the incidence of epilepsy is 23 to 190 per
100,000.¹⁰ The overall incidence of epilepsy in Europe and North America ranges from 24 and 53 per 100,000 per year, respectively. In studies from Africa and South America, the peak incidence of epilepsy occurs in young adults, and the dramatic increase in incidence in the elderly has not been identified. It’s similar to the patterns of incidence, and therefore risks for epilepsy are different in these populations.

The incidence in children is eventually higher and even more variable, ranging from 25 to 840 per 100,000 per year, most of the differences being explained by the differing populations at risk and by the study design. In developing countries, the incidence of the disease is higher than that in industrialized countries and is up to 190 per 100,000 (the higher incidence of epilepsy may also be explained by the different structure of the populations at risk, which is characterized by a predominant distribution of young individuals and a short life expectancy).

In industrialized countries, epilepsy tends to affect mostly the individuals at the two extremes of the age spectrum. The peak in the elderly is not detected in developing countries, where the disease peaks in the 10- to 20-year-old age group.¹ The incidence of epilepsy and unprovoked seizure has been reported to be higher in men than in women in both industrialized and developing countries.³⁰

The incidence of epilepsy is higher in the lower socioeconomic classes. This assumption is supported by the comparison between industrialized and developing countries and by the comparison, within the same population, of people of different ethnic origin.²¹

Several recent studies provide incidence from developing countries. An incidence of epilepsy that is considerably higher than that reported in industrialized countries (114 per 100,000 person-years) has been reported from rural area of Chile.¹¹ A study in Tanzania reported the incidence of epilepsy to be 77 per 100,000. These data are three times the incidence reported in industrialized countries in which similar definitions have been used.¹⁸ In studies in France and Rochester, Minnesota, at least half of newly occurring afebrile seizures do not fulfil criteria for epilepsy. Nonetheless, the incidence of epilepsy may likely be higher in developing countries then in industrialized countries.⁸