Materiały źródłowe

• #1 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #2

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. […] Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. […] Nearly 80% of people with epilepsy live in low- and middle-income countries. […] It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated. […] The risk of premature death in people with epilepsy is up to three times higher than for the general population. […] Three quarters of people with epilepsy living in low-income countries do not get the treatment they need. […] In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. […] Epilepsy accounts for a significant proportion of the worlds disease burden, affecting around 50 million people worldwide.

• #3

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. […] Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. […] Nearly 80% of people with epilepsy live in low- and middle-income countries. […] It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated. […] The risk of premature death in people with epilepsy is up to three times higher than for the general population. […] Three quarters of people with epilepsy living in low-income countries do not get the treatment they need. […] In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. […] Epilepsy accounts for a significant proportion of the worlds disease burden, affecting around 50 million people worldwide.

• #4 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #5

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. […] Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. […] Nearly 80% of people with epilepsy live in low- and middle-income countries. […] It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated. […] The risk of premature death in people with epilepsy is up to three times higher than for the general population. […] Three quarters of people with epilepsy living in low-income countries do not get the treatment they need. […] In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. […] Epilepsy accounts for a significant proportion of the worlds disease burden, affecting around 50 million people worldwide.

• #6 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #7 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #8

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #9 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #10

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #11 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #12

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #13 Prevalence, incidence, and trends of epilepsy among children and adolescents in Africa: a systematic review and meta-analysis | BMC Public Health | Full Text

  https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-024-18236-z

  Epilepsy contributes to a significant disease burden in children and adolescents worldwide. The incidence of childhood epilepsy is threefold higher in low and middle income countries compared in high-income countries. […] The pooled prevalence of cumulative epilepsy was 17.3 per 1000 children. Whereas the pooled prevalence of active and lifetime epilepsy was 6.8 and 18.6 per 1000 children respectively. The pooled incidence of childhood epilepsy was 2.5 per 1000 children. […] Nearly 1 in 50 children are suffering from epilepsy in Africa. However, little attention has been paid to the prevention and treatment of childhood epilepsy. […] The incidence of epilepsy is almost threefold higher in LMICs (139 per 100, 000) compared in high-income countries (HICs) (48.9 per 100, 000). […] The highest incidence of epilepsy is reported during the early age of children and decline as age increases to adulthood.

• #14 Epilepsy in Asian countries | Acta Epileptologica | Full Text

  https://aepi.biomedcentral.com/articles/10.1186/s42494-023-00136-1

  Epilepsy affects 50 million people worldwide. Nearly 80% of people with epilepsy live in resource-constrained low-income and middle-income countries. In Asia, which has a population of over 4 billion or has 50% of the world’s population, about 23 million people have epilepsy. […] The World Health Organization estimates that the worldwide prevalence of epilepsy is roughly 4 to 10 per 1000, with disparities among different regions. On a global scale, the median prevalence of epilepsy is highest in sub-Saharan Africa (15.0/1000) and Latin America (17.8/1000), while the prevalence in Asia is comparable to that of Western countries (6 in 1000). […] Asia has a lower incidence of epilepsy than Latin America or Africa, but a higher incidence than Western nations, likely due to endemic nervous system infections, such as neurocysticercosis, encephalitis, cerebral malaria, tuberculosis, and human immunodeficiency virus infection.

• #15 SciELO Brazil – A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020 A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020

  https://www.scielo.br/j/anp/a/jk3DbWD7pDdQwYcq5PGzj5p/

  Epilepsy is the most common major neurological disorder that affects people of all ages. The prevalence varies from one country to another and even between different areas, due to a lack of access to medical care for reasons related to limited resources. […] Epilepsy is a worldwide public health problem that affects more deeply populations living in developing countries such as Mexico, where more aggressive health policies based on epidemiological data are needed; however, this information is scarce and the evolution of this data over time remains unclear. […] In total, the prevalence of epilepsy in Mexico is 3.9 to 41:1,000 inhabitants; 3.9 to 41 per 1,000 persons in rural regions, and 3.49 to 44.3 per 1,000 persons in urban regions. […] The prevalence of epilepsy in Mexico has remained unchanged during the last 5 decades.

• #16 SciELO Brazil – A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020 A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020

  https://www.scielo.br/j/anp/a/jk3DbWD7pDdQwYcq5PGzj5p/

  Our results confirm a high prevalence of epilepsy in both urban and rural settings in Mexico that remain unchanged during the last 5 decades. […] The prevalence of epilepsy in the epidemiological studies analyzed remain unchanged in rural and urban settings during the last 5 decades in Mexico. […] The present systematic review found a high prevalence of epilepsy in urban and rural regions in Mexico during the last 5 decades compared with developed countries and globally. […] No epidemiological studies concerning the incidence of epilepsy in Mexico were found. […] New and robust epidemiological studies are needed to delineate the epidemiological profile of epilepsy in Mexico.

• #17

  https://journals.lww.com/neur/fulltext/2017/65001/epidemiology_of_epilepsy_surgery_in_india.10.aspx

  An urgent need for establishing new epilepsy surgery centers in all the states of India exists. This may be implemented by reproducing successful and pragmatic epilepsy surgery models and developing a national epilepsy surgery program. This will help in achieving the goal of providing affordable and quality surgical care to all the deserving patients suffering from epilepsy in the country. […] With a prevalence rate of 5 per 1,000 person-years and an incidence rate of 50 per 100,000 person-years, it is estimated that at any given time, India has at least 5 million people with active epilepsy, to which nearly 500,000 people are added annually. Considering that 25% of these patients have drug-resistant epilepsy and half of them are potential candidates for epilepsy surgery, it can be estimated that there are at least 500,000 candidates for epilepsy surgery in India at any given time point. Thus, only 2 in 1000 eligible patients undergo epilepsy surgery in India. This has resulted in a growing pool of patients with drug-resistant epilepsy, which account for 80% of the health care costs for epilepsy. It indicates the continuing need for establishment of many new epilepsy surgery centers in the remote corners of the country.

• #18 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #19 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #20 Epilepsy Facts and Stats | Epilepsy | CDC

  https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

  Almost 3 million U.S. adults have epilepsy. […] During 2021 and 2022, about 2.9 million U.S. adults 18 and older reported having active epilepsy. That is about 1% of all U.S. adults. […] About 456,000 U.S. children 17 and younger have active epilepsy. […] 2021 and 2022 data describing active epilepsy prevalence by age group, educational level, race and ethnicity, sex, current employment status, and insurance coverage are available. […] Health care spending is higher for people with epilepsy or a seizure disorder, than for people without these conditions. […] In 2019, the average annual health care spending for epilepsy and seizures alone was $24.5 billion in the United States. […] Adults with epilepsy have a harder time getting health care compared to adults without epilepsy.

• #21 Epilepsy and Seizures: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1184846-overview

  Epidemiology […] Hauser and collaborators demonstrated that the annual incidence of recurrent nonfebrile seizures in Olmsted County, Minnesota, was about 100 cases per 100,000 persons aged 01 year, 40 per 100,000 persons aged 3940 years, and 140 per 100,000 persons aged 7980 years. By the age of 75 years, the cumulative incidence of epilepsy is 3400 per 100,000 men (3.4%) and 2800 per 100,000 women (2.8%). […] […] […] Studies in several developed countries have shown incidences and prevalences of seizures similar to those in the United States. In some countries, parasitic infections account for an increased incidence of epilepsy and seizures.

• #22 Epilepsy and Seizures: Practice Essentials, Background, Pathophysiology

  https://emedicine.medscape.com/article/1184846-overview

  Epidemiology […] Hauser and collaborators demonstrated that the annual incidence of recurrent nonfebrile seizures in Olmsted County, Minnesota, was about 100 cases per 100,000 persons aged 01 year, 40 per 100,000 persons aged 3940 years, and 140 per 100,000 persons aged 7980 years. By the age of 75 years, the cumulative incidence of epilepsy is 3400 per 100,000 men (3.4%) and 2800 per 100,000 women (2.8%). […] […] […] Studies in several developed countries have shown incidences and prevalences of seizures similar to those in the United States. In some countries, parasitic infections account for an increased incidence of epilepsy and seizures.

• #23 Seizures and epilepsy in older adults: Etiology, clinical presentation, and diagnosis – UpToDate

  https://www.uptodate.com/contents/seizures-and-epilepsy-in-older-adults-etiology-clinical-presentation-and-diagnosis

  Seizures and epilepsy are common in older adults. Nearly one-half of new-onset seizures occur in individuals over the age of 65 years; however, recognizing seizures in this population is challenging because of the paroxysmal nature of the condition and the clinically subtle presentation of seizures in the majority of cases. […] Seizures and epilepsy increase in patients ≥60 years – Age has been shown to be an independent risk factor for developing seizures and epilepsy. Acute symptomatic seizures are common in older patients. The incidence of acute symptomatic seizures in patients older than age 60 years is estimated at 0.55 to 1 per 1000 person-years, with linear increases every decade after age 30 years. […] The incidence and prevalence of epilepsy (recurrent unprovoked seizures) also increase with age in adulthood and are highest in patients over 75 years of age.

• #24

  https://link.springer.com/article/10.1007/s00415-023-12165-4

  A third of people with epilepsy are drug resistant. People with drug-resistant epilepsy (DRE) have a higher risk of mortality and physical injuries than those who respond to anti-seizure medication (ASM). This study describes patient characteristics, comorbidities, and mortality in people with DRE in the UK. […] During the study period, annual DRE incidence ranged from 1.99% to 3.12%. As of 31 March 2021, DRE prevalence was 26.6% (95% confidence interval [CI] 26.3%26.8%). […] All-cause mortality ranged from 3,687 to 4,802 per 100,000 persons with DRE, four times higher than that in the general population in the UK. […] Considerable disease burden was observed in people with DRE in the UK. The findings emphasise the importance of early DRE diagnosis and appropriate disease management in people who develop DRE.

• #25

  https://link.springer.com/article/10.1007/s00415-023-12165-4

  The annual incidence of DRE ranged from 1.99% in 2011 to 3.12% in 2021 among individuals with epilepsy. The accumulated prevalence of DRE increased from 10.0% in 2011 to 26.6% in 2021 among individuals with epilepsy. […] The crude all-cause mortality ranged from 3,417 to 4,439 per 100,000 persons with DRE during the period from 2011 to 2021. The age- and sex-standardised mortality during the study period ranged from 3,687 to 4,802 per 100,000 persons with DRE. Overall, 2%-6% of people with DRE died of epilepsy-related causes every year. […] The findings showed that both the crude and standardised all-cause mortality rates were approximately four times higher in people with DRE compared to the general population in the UK during the same period. The trend was consistent over the study period. This finding highlights the need for early diagnosis and appropriate disease management for people with epilepsy who have an increased risk of DRE.

• #26

  https://link.springer.com/article/10.1007/s00415-023-12165-4

  A third of people with epilepsy are drug resistant. People with drug-resistant epilepsy (DRE) have a higher risk of mortality and physical injuries than those who respond to anti-seizure medication (ASM). This study describes patient characteristics, comorbidities, and mortality in people with DRE in the UK. […] During the study period, annual DRE incidence ranged from 1.99% to 3.12%. As of 31 March 2021, DRE prevalence was 26.6% (95% confidence interval [CI] 26.3%26.8%). […] All-cause mortality ranged from 3,687 to 4,802 per 100,000 persons with DRE, four times higher than that in the general population in the UK. […] Considerable disease burden was observed in people with DRE in the UK. The findings emphasise the importance of early DRE diagnosis and appropriate disease management in people who develop DRE.

• #27 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #28

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. […] Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. […] Nearly 80% of people with epilepsy live in low- and middle-income countries. […] It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated. […] The risk of premature death in people with epilepsy is up to three times higher than for the general population. […] Three quarters of people with epilepsy living in low-income countries do not get the treatment they need. […] In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. […] Epilepsy accounts for a significant proportion of the worlds disease burden, affecting around 50 million people worldwide.

• #29

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #30 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #31 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  Epilepsy is a chronic neurological disorder characterised by recurrent unprovoked seizures (1). It affects an estimated 50 million people worldwide with no socio-demographic boundary (2). Previous studies demonstrated the point prevalence of epilepsy to be between 4 and 10 per 1,000 persons, making it one of the most prevalent neurological conditions (28). The incidence rate of epilepsy is estimated around 5060 per 100,000 person-years (2, 5), and up to 8% of people having at least one seizure in their lifetime (9). […] Treatment gap in epilepsy has long been highlighted as a public health concern. Studies have shown that approximately 80% of people with epilepsy live in low- and middle-income countries, where the treatment gap contributes substantially to the global burden of epilepsy. Up to 90% of epilepsy in these areas is untreated or undertreated, due to factors such as limited healthcare resources, cultural beliefs, social stigma, and preferential use of traditional treatments (2123). This treatment gap is associated with poor health outcomes, life threatening conditions such as status epilepticus, and subsequently higher healthcare utilisation and healthcare costs.

• #32 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #33 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #34 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #35 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #36 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #37

  https://link.springer.com/article/10.1007/s00415-023-12165-4

  The annual incidence of DRE ranged from 1.99% in 2011 to 3.12% in 2021 among individuals with epilepsy. The accumulated prevalence of DRE increased from 10.0% in 2011 to 26.6% in 2021 among individuals with epilepsy. […] The crude all-cause mortality ranged from 3,417 to 4,439 per 100,000 persons with DRE during the period from 2011 to 2021. The age- and sex-standardised mortality during the study period ranged from 3,687 to 4,802 per 100,000 persons with DRE. Overall, 2%-6% of people with DRE died of epilepsy-related causes every year. […] The findings showed that both the crude and standardised all-cause mortality rates were approximately four times higher in people with DRE compared to the general population in the UK during the same period. The trend was consistent over the study period. This finding highlights the need for early diagnosis and appropriate disease management for people with epilepsy who have an increased risk of DRE.

• #38 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #39 CDC-supported epilepsy surveillance and epidemiologic studies: A review of progress since 1994 – PubMed

  https://pubmed.ncbi.nlm.nih.gov/32451250/

  To report progress, to identify gaps, and to plan epilepsy surveillance and research activities more effectively, the Centers for Disease Control and Prevention (CDC) Epilepsy Program has summarized findings from selected CDC-supported surveillance and epidemiologic studies about epilepsy from 1994 through 2019. […] Over the past 25 years, CDC has expanded community, state, and national surveillance on epilepsy and supported epidemiologic studies by using multiple assessment methods and validated case-ascertainment criteria to identify epilepsy burden, epilepsy-related outcomes, and healthcare utilization in the general population or in population subgroups. […] Among identified research opportunities, studies on epilepsy incidence and risk factors, mortality, and cost are considered as important surveillance gaps. Findings from this review may help epilepsy researchers and other stakeholders reference and prioritize future activities for epidemiologic and surveillance studies in epilepsy.

• #40 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #41 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #42 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #43 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Obtaining a complete picture of epilepsy in the United States would require collecting many data elements. […] However, developing the capacity to gather many, if not all, of these data elements using validated instruments and different data sources on representative populations and subgroups over time will enable an informed public health response to promote health and well-being for people with epilepsy. […] Improving epilepsy surveillance will involve overcoming several challenges in measurement and methodology. […] Many of the data currently collected cannot be validated, are not comparable, cannot be used to understand trends over time, are not representative of the U.S. population, and cannot be analyzed for important population subgroups. […] The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment and diagnostic accuracy, such as the use of varying definitions and coding algorithms; variations in measurement of health service use, quality, access, and costs; heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.

• #44 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Obtaining a complete picture of epilepsy in the United States would require collecting many data elements. […] However, developing the capacity to gather many, if not all, of these data elements using validated instruments and different data sources on representative populations and subgroups over time will enable an informed public health response to promote health and well-being for people with epilepsy. […] Improving epilepsy surveillance will involve overcoming several challenges in measurement and methodology. […] Many of the data currently collected cannot be validated, are not comparable, cannot be used to understand trends over time, are not representative of the U.S. population, and cannot be analyzed for important population subgroups. […] The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment and diagnostic accuracy, such as the use of varying definitions and coding algorithms; variations in measurement of health service use, quality, access, and costs; heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.

• #45 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Obtaining a complete picture of epilepsy in the United States would require collecting many data elements. […] However, developing the capacity to gather many, if not all, of these data elements using validated instruments and different data sources on representative populations and subgroups over time will enable an informed public health response to promote health and well-being for people with epilepsy. […] Improving epilepsy surveillance will involve overcoming several challenges in measurement and methodology. […] Many of the data currently collected cannot be validated, are not comparable, cannot be used to understand trends over time, are not representative of the U.S. population, and cannot be analyzed for important population subgroups. […] The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment and diagnostic accuracy, such as the use of varying definitions and coding algorithms; variations in measurement of health service use, quality, access, and costs; heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.

• #46 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Obtaining a complete picture of epilepsy in the United States would require collecting many data elements. […] However, developing the capacity to gather many, if not all, of these data elements using validated instruments and different data sources on representative populations and subgroups over time will enable an informed public health response to promote health and well-being for people with epilepsy. […] Improving epilepsy surveillance will involve overcoming several challenges in measurement and methodology. […] Many of the data currently collected cannot be validated, are not comparable, cannot be used to understand trends over time, are not representative of the U.S. population, and cannot be analyzed for important population subgroups. […] The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment and diagnostic accuracy, such as the use of varying definitions and coding algorithms; variations in measurement of health service use, quality, access, and costs; heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.

• #47 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Obtaining a complete picture of epilepsy in the United States would require collecting many data elements. […] However, developing the capacity to gather many, if not all, of these data elements using validated instruments and different data sources on representative populations and subgroups over time will enable an informed public health response to promote health and well-being for people with epilepsy. […] Improving epilepsy surveillance will involve overcoming several challenges in measurement and methodology. […] Many of the data currently collected cannot be validated, are not comparable, cannot be used to understand trends over time, are not representative of the U.S. population, and cannot be analyzed for important population subgroups. […] The following are among the major measurement and methodological considerations that are barriers to epilepsy surveillance and research: a lack of standardization in case ascertainment and diagnostic accuracy, such as the use of varying definitions and coding algorithms; variations in measurement of health service use, quality, access, and costs; heterogeneous approaches to assessing the impact of epilepsy on health status and quality of life; and challenges in identifying and recruiting health care providers and people with epilepsy to participate in surveillance and research projects.

• #48 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  To overcome the paucity of surveillance data and use the data to improve the lives of people with epilepsy, expanded data collection efforts must use consistent methodologies. […] The Common Data Elements project aims to establish common methodologies and terminologies to enable comparable datasets across studies. […] Demonstration projects that validate the use of specific definitions of epilepsy and criteria for case ascertainment, health care services use, quality of life, and cost measurement are needed to help standardize the current diversity of measures used in surveillance. […] Data elements for epilepsy surveillance can come from many different sources. […] The principal data sources for public health surveillance of the epilepsies include population surveys, registries and condition-specific reporting systems, and records from visits to health care providers.

• #49 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  To overcome the paucity of surveillance data and use the data to improve the lives of people with epilepsy, expanded data collection efforts must use consistent methodologies. […] The Common Data Elements project aims to establish common methodologies and terminologies to enable comparable datasets across studies. […] Demonstration projects that validate the use of specific definitions of epilepsy and criteria for case ascertainment, health care services use, quality of life, and cost measurement are needed to help standardize the current diversity of measures used in surveillance. […] Data elements for epilepsy surveillance can come from many different sources. […] The principal data sources for public health surveillance of the epilepsies include population surveys, registries and condition-specific reporting systems, and records from visits to health care providers.

• #50 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  These data sources can be mined for broad, population-based surveillance purposes and can be used to inform a variety of population-based studies. […] General population health surveys are rich sources of data on a wide range of health-related topics. […] Population health surveys capture many aspects of health conditions and individual characteristics that are well suited for understanding the public health burden of the epilepsies. […] In the United States, the federal agency responsible for public health surveillance is the CDC. […] The CDC conducts two large general population surveys, the National Health Interview Survey and the BRFSS surveys and also provides support for some other state and local health surveys. […] These population health surveys are an important part of epilepsy surveillance and provide representative data to estimate epilepsy prevalence as well as comparative data to understand the burden of the epilepsies.

• #51 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  These data sources can be mined for broad, population-based surveillance purposes and can be used to inform a variety of population-based studies. […] General population health surveys are rich sources of data on a wide range of health-related topics. […] Population health surveys capture many aspects of health conditions and individual characteristics that are well suited for understanding the public health burden of the epilepsies. […] In the United States, the federal agency responsible for public health surveillance is the CDC. […] The CDC conducts two large general population surveys, the National Health Interview Survey and the BRFSS surveys and also provides support for some other state and local health surveys. […] These population health surveys are an important part of epilepsy surveillance and provide representative data to estimate epilepsy prevalence as well as comparative data to understand the burden of the epilepsies.

• #52 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Further, they provide an evidence base to track trends over time in prevalence and treatment practices and in the relationship between epilepsy and a broad range of social and health-related outcomes. […] The sample size of these surveys tends to be large enough to compare people with and without epilepsy. […] However, participation is voluntary and declining, and some populations are not covered. […] Response rates to general population surveys, particularly those conducted by telephone, have declined significantly over the past several decades and may lead to nonresponse bias. […] The increased use of cellular telephones has created challenges to adequately cover the general population with traditional landline random-digit dialing sampling methods. […] These surveys also generally omit other important segments of the population, such as people who are homeless or those living in institutions.

• #53 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Further, they provide an evidence base to track trends over time in prevalence and treatment practices and in the relationship between epilepsy and a broad range of social and health-related outcomes. […] The sample size of these surveys tends to be large enough to compare people with and without epilepsy. […] However, participation is voluntary and declining, and some populations are not covered. […] Response rates to general population surveys, particularly those conducted by telephone, have declined significantly over the past several decades and may lead to nonresponse bias. […] The increased use of cellular telephones has created challenges to adequately cover the general population with traditional landline random-digit dialing sampling methods. […] These surveys also generally omit other important segments of the population, such as people who are homeless or those living in institutions.

• #54 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Further, they provide an evidence base to track trends over time in prevalence and treatment practices and in the relationship between epilepsy and a broad range of social and health-related outcomes. […] The sample size of these surveys tends to be large enough to compare people with and without epilepsy. […] However, participation is voluntary and declining, and some populations are not covered. […] Response rates to general population surveys, particularly those conducted by telephone, have declined significantly over the past several decades and may lead to nonresponse bias. […] The increased use of cellular telephones has created challenges to adequately cover the general population with traditional landline random-digit dialing sampling methods. […] These surveys also generally omit other important segments of the population, such as people who are homeless or those living in institutions.

• #55 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Additionally, population survey data on children with epilepsy are insufficient. […] The CDC conducts the Youth Risk Behavior Surveillance System, but these surveys cover only high school students and are limited in scope as they focus on the six categories of high-risk behaviors that are leading causes of morbidity, mortality, and social problems in U.S. youth. […] As currently framed, the YRBSS is not a potential source of epilepsy data. […] The NHIS asks parents whether their child has had any seizures in the last 12 months but does not ask whether these are epilepsy seizures, which limits its usefulness for epilepsy surveillance. […] The National Survey of Children’s Health did not include epilepsy in its 2003 version, but the 2007 version asked whether the parent was ever told that the child had epilepsy.

• #56 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Third, these surveys rely on self-reported data and are vulnerable to error. […] For example, self-reported epilepsy may overestimate the presence of epilepsy within the population due to reports of seizures that are not epilepsy seizures, and they may underestimate seizure count. […] Although incorporating questions about epilepsy into the BRFSS surveys has limitations, having a broader set of epilepsy-related questions asked in all participating states would generate more and improved surveillance data. […] Additional survey questions on receiving medical care from epileptologists or at an epilepsy specialty center have been developed by CDC but not yet included in surveys. […] While there is speculation that people with epilepsy who receive specialty care have better outcomes than those who do not, there is currently no population-based evidence to test this hypothesis.

• #57 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  The study plans to monitor the development of EHRs to determine the feasibility of including medical records in its data collection, but currently the primary mechanism will be surveys. […] Epilepsy is one of the study’s outcomes of interest, and several research projects have begun to develop and validate its questionnaires and other data collection mechanisms. […] In recent years, registries have become a common source of data that facilitate health condition-specific research. […] While registries vary from system to system, they share a common goal of collecting condition-specific, comprehensive incidence and related diagnostic data in a defined population. […] These condition-specific reporting systems may also be used to track health outcomes over time. […] Well-developed registries can be a valuable resource for conditions such as epilepsy that may yield relatively small samples in population surveys and other surveillance data sources.

• #58 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  The study plans to monitor the development of EHRs to determine the feasibility of including medical records in its data collection, but currently the primary mechanism will be surveys. […] Epilepsy is one of the study’s outcomes of interest, and several research projects have begun to develop and validate its questionnaires and other data collection mechanisms. […] In recent years, registries have become a common source of data that facilitate health condition-specific research. […] While registries vary from system to system, they share a common goal of collecting condition-specific, comprehensive incidence and related diagnostic data in a defined population. […] These condition-specific reporting systems may also be used to track health outcomes over time. […] Well-developed registries can be a valuable resource for conditions such as epilepsy that may yield relatively small samples in population surveys and other surveillance data sources.

• #59 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Health care diagnoses and treatment decisions are coded in the patients medical record, generally with International Classification of Disease Clinical Modification codes, for billing and follow-up purposes. […] Researchers use these disease- or disorder-specific diagnostic and treatment codes to identify records for individuals with specific health conditions. […] Using codes for case ascertainment is more cost-effective than conducting reviews of each record by hand or interviewing each individual in the study population. […] Furthermore, the current nationwide drive to implement electronic health records offers unprecedented opportunities to capture, share, and analyze coded data for surveillance purposes. […] Nonetheless, epilepsy is challenging to diagnose and match to the appropriate code, and variations in coding practices can lead to over- or under-reporting of epilepsy.

• #60 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  The major example of records linkage in epilepsy is the Rochester Epidemiology Project, where records for Minnesota residents of Rochester, Olmsted County, and the region around Olmstead County have been centralized. […] These multisource surveillance systems permit reasonably complete case ascertainment in their populations and identification of fairly comprehensive service use, and they allow longitudinal follow-up of individuals and trend analysis. […] The expanded use and adoption of linkable EHRs will enhance the opportunity for linked data sources in the future, and validation studies can confirm the methodologies and results. […] In conclusion, a variety of data sources are currently used for epilepsy surveillance in the United States. […] These data sources can provide only partial estimates of many basic surveillance indicators, including epilepsy incidence, prevalence, etiologies, risk factors, comorbidities, health status, quality of life, access to care, quality of care, and cost of care.

• #61 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #62 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #63 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Existing surveillance data on epilepsy do not provide current or complete information on how this disorder affects the U.S. population. […] Currently epilepsy-related data are not standardized across studies, which limits the accuracy of case ascertainment and coding and hinders monitoring of health services and quality of life. […] In addition, epilepsy is not routinely included in major population surveys, registries, and other databases. […] Actions needed to provide more timely information on a number of key attributes of the epilepsies such as incidence, prevalence, comorbidities, services utilization, and costs include the standardization of definitions and criteria for epilepsy surveillance and research as well as the continuation and expansion of epilepsy-related data collection from a variety of sources.

• #64 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  To overcome the paucity of surveillance data and use the data to improve the lives of people with epilepsy, expanded data collection efforts must use consistent methodologies. […] The Common Data Elements project aims to establish common methodologies and terminologies to enable comparable datasets across studies. […] Demonstration projects that validate the use of specific definitions of epilepsy and criteria for case ascertainment, health care services use, quality of life, and cost measurement are needed to help standardize the current diversity of measures used in surveillance. […] Data elements for epilepsy surveillance can come from many different sources. […] The principal data sources for public health surveillance of the epilepsies include population surveys, registries and condition-specific reporting systems, and records from visits to health care providers.

• #65 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Improved surveillance of epilepsy will require linked electronic databases that cover large, representative populations. […] A crucial prerequisite for accurate and meaningful surveillance will be the validation of algorithms and methods for different age groups and settings. […] Standardized definitions and methods will allow surveillance data to be compared and actionable. […] The nationwide move to EHRs offers an unprecedented chance to capture data on epilepsy.

• #66 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Improved surveillance of epilepsy will require linked electronic databases that cover large, representative populations. […] A crucial prerequisite for accurate and meaningful surveillance will be the validation of algorithms and methods for different age groups and settings. […] Standardized definitions and methods will allow surveillance data to be compared and actionable. […] The nationwide move to EHRs offers an unprecedented chance to capture data on epilepsy.

• #67 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Improved surveillance of epilepsy will require linked electronic databases that cover large, representative populations. […] A crucial prerequisite for accurate and meaningful surveillance will be the validation of algorithms and methods for different age groups and settings. […] Standardized definitions and methods will allow surveillance data to be compared and actionable. […] The nationwide move to EHRs offers an unprecedented chance to capture data on epilepsy.

• #68 Epidemiology, Risk Factors, and Biomarkers of Post-Traumatic Epilepsy: A Comprehensive Overview

  https://www.mdpi.com/2227-9059/12/2/410

  Post-traumatic epilepsy (PTE) represents a complex neurological disorder arising as sequelae of traumatic brain injury (TBI), and characterized by recurrent, unprovoked seizures. […] Epidemiologically, PTE accounts for a noteworthy fraction of all acquired epilepsies, especially in populations exposed to higher risks of head trauma, such as military personnel and individuals involved in contact sports. The incidence of PTE varies considerably, impacted by elements like the severity of the initial injury, age when the trauma occurs, and the presence of specific intracranial pathologies. The epidemiological trends understanding is crucial in identifying populations at risk and implementing targeted preventive strategies. […] The PTE risk factors are multifaceted, encompassing both clinical and demographic variables. Consistently linked to an elevated risk of developing PTE are elements such as the gravity of the initial brain injury, the existence of intracranial hemorrhages, and the occurrence of early post-traumatic seizures (EPTS). Age, gender, and genetic predispositions also contribute, suggesting complex interactions between environmental influences and inherent susceptibility. […] This study compiles recent knowledge on PTE epidemiology, biomarkers, and risk factors, aiming to provide an in-depth synthesis that illuminates clinical practice and guides future research in this evolving field.

• #69 Epidemiology, Risk Factors, and Biomarkers of Post-Traumatic Epilepsy: A Comprehensive Overview

  https://www.mdpi.com/2227-9059/12/2/410

  Post-traumatic epilepsy (PTE) represents a complex neurological disorder arising as sequelae of traumatic brain injury (TBI), and characterized by recurrent, unprovoked seizures. […] Epidemiologically, PTE accounts for a noteworthy fraction of all acquired epilepsies, especially in populations exposed to higher risks of head trauma, such as military personnel and individuals involved in contact sports. The incidence of PTE varies considerably, impacted by elements like the severity of the initial injury, age when the trauma occurs, and the presence of specific intracranial pathologies. The epidemiological trends understanding is crucial in identifying populations at risk and implementing targeted preventive strategies. […] The PTE risk factors are multifaceted, encompassing both clinical and demographic variables. Consistently linked to an elevated risk of developing PTE are elements such as the gravity of the initial brain injury, the existence of intracranial hemorrhages, and the occurrence of early post-traumatic seizures (EPTS). Age, gender, and genetic predispositions also contribute, suggesting complex interactions between environmental influences and inherent susceptibility. […] This study compiles recent knowledge on PTE epidemiology, biomarkers, and risk factors, aiming to provide an in-depth synthesis that illuminates clinical practice and guides future research in this evolving field.

• #70 2020 Epilepsy Highlight – The Epidemiology of Epilepsy and Traumatic Brain Injury: Severity, Mechanism, and Outcomes, Epilepsy Program, Congressionally Directed Medical Research Programs

  https://cdmrp.health.mil/erp/research_highlights/20pugh_highlight

  The roadmap toward designing the next generation of clinical trials for post-traumatic epilepsy (PTE) is complex. […] A key and critical facet of moving clinical interventions forward is understanding who is most vulnerable to PTE following a traumatic brain injury (TBI). […] Finding the answers to these questions will help us understand the interrelationship between TBI and epilepsy, as well as what accelerates or increases vulnerability to epilepsy after TBI. […] To date, she has started to measure the behavioral and cognitive consequences of TBI in individuals with TBI/epilepsy. […] When the study is completed, an improved understanding will be gained of who is most vulnerable and how their daily lives are affected. […] In addition to informing the types of medications they should receive, studies such as these may aid in further tailoring their care.

• #71

  https://aesnet.org/abstractslisting/population-based-surveillance-of-sudden-unexpected-death-in-epilepsy-using-the-sudden-death-in-the-young-case-registry

  Rationale: Surveillance of pediatric sudden unexpected death in epilepsy (SUDEP) in the United States has largely been based on convenience samples to date; few population-based studies have been performed. […] The NIH/CDC Sudden Death in the Young (SDY) Case Registry provides an opportunity to explore population-based data on pediatric SUDEP and identify associations that may inform prevention efforts. […] The SDY Registry provides important population-based data on SUDEP. Future research could explore the barriers to autopsy in this population and the racial and age-specific differences in SUDEP mortality rates.

• #72

  https://aesnet.org/abstractslisting/population-based-surveillance-of-sudden-unexpected-death-in-epilepsy-using-the-sudden-death-in-the-young-case-registry

  Rationale: Surveillance of pediatric sudden unexpected death in epilepsy (SUDEP) in the United States has largely been based on convenience samples to date; few population-based studies have been performed. […] The NIH/CDC Sudden Death in the Young (SDY) Case Registry provides an opportunity to explore population-based data on pediatric SUDEP and identify associations that may inform prevention efforts. […] The SDY Registry provides important population-based data on SUDEP. Future research could explore the barriers to autopsy in this population and the racial and age-specific differences in SUDEP mortality rates.

• #73 Epilepsy in Asian countries | Acta Epileptologica | Full Text

  https://aepi.biomedcentral.com/articles/10.1186/s42494-023-00136-1

  Improving epilepsy care and education is crucial to addressing the issue of SUDEP in Asian countries. Measures should be made to increase the awareness, improve the availability of healthcare services, advance research, and foster collaborations among healthcare professionals, policymakers, and communities to prevent and minimize the occurrence of SUDEP in Asia.

• #74 Epilepsy surveillance in normocephalic children with and without prenatal Zika virus exposure | PLOS Neglected Tropical Diseases

  https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0008874

  Children with Congenital Zika Syndrome and microcephaly are at high risk for epilepsy; however, the risk is unclear in normocephalic children with prenatal Zika virus (ZIKV) exposure [Exposed Children (EC)]. […] We aimed to address this question by conducting epilepsy surveillance in a prospective cohort of normocephalic EC alongside a parallel group of normocephalic unexposed children (UC). […] Our results indicate that epilepsy rates are modestly elevated in EC. […] Our findings suggest that epilepsy surveillance should be included in the neurodevelopmental assessment of children with prenatal Zika virus exposure, even in the absence of neurologic manifestations at birth. […] There was a modestly elevated incidence rate of epilepsy at one year of life in EC, in the absence of any other apparent neurological manifestations.

• #75 Epilepsy surveillance in normocephalic children with and without prenatal Zika virus exposure | PLOS Neglected Tropical Diseases

  https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0008874

  Children with Congenital Zika Syndrome and microcephaly are at high risk for epilepsy; however, the risk is unclear in normocephalic children with prenatal Zika virus (ZIKV) exposure [Exposed Children (EC)]. […] We aimed to address this question by conducting epilepsy surveillance in a prospective cohort of normocephalic EC alongside a parallel group of normocephalic unexposed children (UC). […] Our results indicate that epilepsy rates are modestly elevated in EC. […] Our findings suggest that epilepsy surveillance should be included in the neurodevelopmental assessment of children with prenatal Zika virus exposure, even in the absence of neurologic manifestations at birth. […] There was a modestly elevated incidence rate of epilepsy at one year of life in EC, in the absence of any other apparent neurological manifestations.

• #76 Epilepsy surveillance in normocephalic children with and without prenatal Zika virus exposure | PLOS Neglected Tropical Diseases

  https://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0008874

  Continued surveillance is needed to better characterize lifetime epilepsy risk in EC, identify potential second hits, and characterize the developmental trajectory of seizure expression. […] Epilepsy surveillance procedures should be included in the neurodevelopmental assessment of children with suspected, probable, or confirmed in utero ZIKV exposure during their first two years of life, even if no neurologic manifestations are present at birth.

• #77 Epilepsy Facts and Stats | Epilepsy | CDC

  https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

  Almost 3 million U.S. adults have epilepsy. […] During 2021 and 2022, about 2.9 million U.S. adults 18 and older reported having active epilepsy. That is about 1% of all U.S. adults. […] About 456,000 U.S. children 17 and younger have active epilepsy. […] 2021 and 2022 data describing active epilepsy prevalence by age group, educational level, race and ethnicity, sex, current employment status, and insurance coverage are available. […] Health care spending is higher for people with epilepsy or a seizure disorder, than for people without these conditions. […] In 2019, the average annual health care spending for epilepsy and seizures alone was $24.5 billion in the United States. […] Adults with epilepsy have a harder time getting health care compared to adults without epilepsy.

• #78 Epilepsy Facts and Stats | Epilepsy | CDC

  https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

  Almost 3 million U.S. adults have epilepsy. […] During 2021 and 2022, about 2.9 million U.S. adults 18 and older reported having active epilepsy. That is about 1% of all U.S. adults. […] About 456,000 U.S. children 17 and younger have active epilepsy. […] 2021 and 2022 data describing active epilepsy prevalence by age group, educational level, race and ethnicity, sex, current employment status, and insurance coverage are available. […] Health care spending is higher for people with epilepsy or a seizure disorder, than for people without these conditions. […] In 2019, the average annual health care spending for epilepsy and seizures alone was $24.5 billion in the United States. […] Adults with epilepsy have a harder time getting health care compared to adults without epilepsy.

• #79 Epilepsy Facts and Stats | Epilepsy | CDC

  https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

  Almost 3 million U.S. adults have epilepsy. […] During 2021 and 2022, about 2.9 million U.S. adults 18 and older reported having active epilepsy. That is about 1% of all U.S. adults. […] About 456,000 U.S. children 17 and younger have active epilepsy. […] 2021 and 2022 data describing active epilepsy prevalence by age group, educational level, race and ethnicity, sex, current employment status, and insurance coverage are available. […] Health care spending is higher for people with epilepsy or a seizure disorder, than for people without these conditions. […] In 2019, the average annual health care spending for epilepsy and seizures alone was $24.5 billion in the United States. […] Adults with epilepsy have a harder time getting health care compared to adults without epilepsy.

• #80 Azthena logo with the word Azthena

  https://www.news-medical.net/health/Epilepsy-Epidemiology.aspx

  Epilepsy is a common disorder which affects 50 million people worldwide. As the disorder is not curable there is a very high prevalence or existing population with this disorder. Every year several hundreds of thousands join this pool of patients as new cases. […] In the UK one in 20 people will have a one-off epileptic seizure at some point in their lives. This does not mean that they have epilepsy. One in 50 people will have epilepsy at some time in their life. This however may not be a lifelong condition for all of these individuals. Around 75 people are diagnosed with epilepsy every day and more than half a million people in the UK have epilepsy. This means about one in every 100 has the condition. […] Epilepsy affects about 2 to 3 million people in the United States. About 10% of Americans will experience a seizure sometime during their lives. It leads to direct medical costs and indirect costs (lost or reduced earnings and productivity) to the tune of $15 to 17 billion annually.

• #81 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Each of these types of instruments has its own characteristics and requires careful consideration before being used to monitor quality of life in surveillance systems. […] With the variety of validated instruments that are available, standardizing the approach and frequent use of a common instrument will help generate comparable data on the impact of epilepsy on individuals. […] The measurement of indirect costs associated with productivity losses reflects the full impact of epilepsy in economic terms. […] A few estimates of these costs have been calculated by estimating the lost productivity of people with epilepsy due to premature morbidity and mortality. […] Other dimensions of indirect costs, such as those associated with pain and suffering or those due to lost productivity of family members who care for an individual with epilepsy, have not been addressed.

• #82 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Studies that have examined the indirect costs of epilepsy find that they generally exceed direct costs by a significant margin. […] Lack of participation by people with epilepsy and their health care providers in surveillance and research efforts can be a challenge to researchers. […] The low scientific and health literacy of the general U.S. population may lead to potential participants being unaware of the reasons why they should participate. […] Reporting information and responding to surveys can be time-consuming, and accurate, complete reporting may be difficult for people with cognitive and memory impairments. […] Further, people with epilepsy may not want to openly discuss their condition out of fear of repercussions due to stigma. […] To maximize participation in surveillance and research and to help ensure that research has valid results, the burden on participants should be minimized; participants should be informed of the value of their participation and the ways their data will be used; any relevant HIPAA or privacy considerations should be communicated to participants, who should also be informed that their data will be de-identified; and research instruments should follow the principles of clear communication and be culturally appropriate.

• #83

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  Epilepsy is a chronic noncommunicable disease of the brain that affects people of all ages. […] Around 50 million people worldwide have epilepsy, making it one of the most common neurological diseases globally. […] Nearly 80% of people with epilepsy live in low- and middle-income countries. […] It is estimated that up to 70% of people living with epilepsy could live seizure-free if properly diagnosed and treated. […] The risk of premature death in people with epilepsy is up to three times higher than for the general population. […] Three quarters of people with epilepsy living in low-income countries do not get the treatment they need. […] In many parts of the world, people with epilepsy and their families suffer from stigma and discrimination. […] Epilepsy accounts for a significant proportion of the worlds disease burden, affecting around 50 million people worldwide.

• #84

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #85

  https://www.who.int/news-room/fact-sheets/detail/epilepsy

  The estimated proportion of the general population with active epilepsy (i.e. continuing seizures or with the need for treatment) at a given time is between 4 and 10 per 1000 people. […] Globally, an estimated 5 million people are diagnosed with epilepsy each year. […] In low- and middle-income countries, this figure can be as high as 139 per 100 000. […] In low-income countries, about three quarters of people with epilepsy may not receive the treatment they need. This is called the treatment gap. […] In many low- and middle-income countries, there is low availability of antiseizure medicines. […] WHO pilot projects have indicated that training primary health-care providers to diagnose and treat epilepsy can effectively reduce the epilepsy treatment gap. […] An estimated 25% of epilepsy cases are potentially preventable.

• #86 Epilepsy Facts and Stats | Epilepsy | CDC

  https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

  Almost 3 million U.S. adults have epilepsy. […] During 2021 and 2022, about 2.9 million U.S. adults 18 and older reported having active epilepsy. That is about 1% of all U.S. adults. […] About 456,000 U.S. children 17 and younger have active epilepsy. […] 2021 and 2022 data describing active epilepsy prevalence by age group, educational level, race and ethnicity, sex, current employment status, and insurance coverage are available. […] Health care spending is higher for people with epilepsy or a seizure disorder, than for people without these conditions. […] In 2019, the average annual health care spending for epilepsy and seizures alone was $24.5 billion in the United States. […] Adults with epilepsy have a harder time getting health care compared to adults without epilepsy.

• #87 Epilepsy in Asian countries | Acta Epileptologica | Full Text

  https://aepi.biomedcentral.com/articles/10.1186/s42494-023-00136-1

  Investigations have shown that misconceptions about epilepsy, economic hardship, stigma, as well as unavailability of health workers and drugs have been significant factors affecting early diagnosis and treatment in Asia. […] The treatment gap in epilepsy management is a major concern for patients, their families and care providers. The treatment gap is defined as the proportion of people with epilepsy who are not adequately treated. […] The rate of treatment in Asia has been hindered by several issues, including insufficient healthcare, lack of specialist care, limited pharmacological treatment options, lack of affordable options, distance from medical facilities, lack of awareness, stigma, beliefs, and traditional medicine. […] The government should collaborate with NGOs to supply antiseizure medications and diagnostic tools to remote communities.

• #88

  https://journals.lww.com/co-neurology/fulltext/2003/04000/the_epidemiology_of_epilepsy_revisited.8.aspx

  Epidemiology is the study of the dynamics of a medical condition in a population. There are many shortcomings in the understanding of the epidemiology of epilepsy mostly caused by methodological problems. These include diagnostic accuracy, case ascertainment, and selection bias. […] It is generally accepted that in developed countries the incidence is around 50/100 000/year. In resource-poor countries, the incidence is likely to be higher. Prevalence of active epilepsy is in the range of 5-10/1000 in most locations, although it might be higher in some isolates. Age-specific incidence rates have changed, with a decrease in younger age groups and an increase in persons above 60 years. The overall prognosis for seizure control is good and over 70% will enter remission. Epilepsy carries an increased risk of premature death particularly in patients with chronic epilepsy. Sudden unexpected death has been increasingly recognized as a major culprit for this increased mortality.

• #89

  https://journals.lww.com/co-neurology/fulltext/2003/04000/the_epidemiology_of_epilepsy_revisited.8.aspx

  Epidemiology is the study of the dynamics of a medical condition in a population. There are many shortcomings in the understanding of the epidemiology of epilepsy mostly caused by methodological problems. These include diagnostic accuracy, case ascertainment, and selection bias. […] It is generally accepted that in developed countries the incidence is around 50/100 000/year. In resource-poor countries, the incidence is likely to be higher. Prevalence of active epilepsy is in the range of 5-10/1000 in most locations, although it might be higher in some isolates. Age-specific incidence rates have changed, with a decrease in younger age groups and an increase in persons above 60 years. The overall prognosis for seizure control is good and over 70% will enter remission. Epilepsy carries an increased risk of premature death particularly in patients with chronic epilepsy. Sudden unexpected death has been increasingly recognized as a major culprit for this increased mortality.

• #90

  https://www.vin.com/doc/?id=3843810&pid=8708

  Epilepsy is the most common neurological disorder in canines. The clinical signs are often of a very serious nature and may constitute a threat to the patients life. Thus, the need to expand the understanding of the disorder is obvious. Epidemiological research on epilepsy is an excellent tool when studying the characteristics of epilepsy. It provides important information on the natural history of the condition, and thus is useful in the diagnostic and prognostic work with epilepsy patients. […] A limited number of papers dealing with the epidemiology of canine epilepsy have been published over the years. With few exceptions, the findings of these studies have been based on data from retrospective hospital-based referral practices. The lack of standardized definitions or a defined methodology, especially with regard to patient selection bias, diagnostic accuracy and seizure classification, makes it difficult to compare results across studies.

• #91 CDC-supported epilepsy surveillance and epidemiologic studies: A review of progress since 1994 – PubMed

  https://pubmed.ncbi.nlm.nih.gov/32451250/

  To report progress, to identify gaps, and to plan epilepsy surveillance and research activities more effectively, the Centers for Disease Control and Prevention (CDC) Epilepsy Program has summarized findings from selected CDC-supported surveillance and epidemiologic studies about epilepsy from 1994 through 2019. […] Over the past 25 years, CDC has expanded community, state, and national surveillance on epilepsy and supported epidemiologic studies by using multiple assessment methods and validated case-ascertainment criteria to identify epilepsy burden, epilepsy-related outcomes, and healthcare utilization in the general population or in population subgroups. […] Among identified research opportunities, studies on epilepsy incidence and risk factors, mortality, and cost are considered as important surveillance gaps. Findings from this review may help epilepsy researchers and other stakeholders reference and prioritize future activities for epidemiologic and surveillance studies in epilepsy.

• #92 CDC-supported epilepsy surveillance and epidemiologic studies: A review of progress since 1994 – PubMed

  https://pubmed.ncbi.nlm.nih.gov/32451250/

  To report progress, to identify gaps, and to plan epilepsy surveillance and research activities more effectively, the Centers for Disease Control and Prevention (CDC) Epilepsy Program has summarized findings from selected CDC-supported surveillance and epidemiologic studies about epilepsy from 1994 through 2019. […] Over the past 25 years, CDC has expanded community, state, and national surveillance on epilepsy and supported epidemiologic studies by using multiple assessment methods and validated case-ascertainment criteria to identify epilepsy burden, epilepsy-related outcomes, and healthcare utilization in the general population or in population subgroups. […] Among identified research opportunities, studies on epilepsy incidence and risk factors, mortality, and cost are considered as important surveillance gaps. Findings from this review may help epilepsy researchers and other stakeholders reference and prioritize future activities for epidemiologic and surveillance studies in epilepsy.

• #93 SciELO Brazil – A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020 A systematic review of the epidemiology of epilepsy in Mexico during 1970 to 2020

  https://www.scielo.br/j/anp/a/jk3DbWD7pDdQwYcq5PGzj5p/

  Our results confirm a high prevalence of epilepsy in both urban and rural settings in Mexico that remain unchanged during the last 5 decades. […] The prevalence of epilepsy in the epidemiological studies analyzed remain unchanged in rural and urban settings during the last 5 decades in Mexico. […] The present systematic review found a high prevalence of epilepsy in urban and rural regions in Mexico during the last 5 decades compared with developed countries and globally. […] No epidemiological studies concerning the incidence of epilepsy in Mexico were found. […] New and robust epidemiological studies are needed to delineate the epidemiological profile of epilepsy in Mexico.

• #94 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #95 Epidemiology of Epilepsy and Seizures | Frontiers Research Topic

  https://www.frontiersin.org/research-topics/30166/epidemiology-of-epilepsy-and-seizures/magazine

  Epilepsy is a serious chronic neurological disorder characterised by recurrent seizures. Over 80% of patients with epilepsy live in economically disadvantaged countries and predominantly under no treatment. Worldwide, it is estimated epilepsy affects 50 million people at any one time, and 4.8 million people have new onset epilepsy each year. Moreover, one in 26 people will develop epilepsy during their lifetime. […] For better epilepsy management, it is crucial to improve our collective understanding on epidemiology of seizure and epilepsy. Considering the numerous types of seizure and epilepsy and their healthcare burden, the research into the epidemiology of seizure and epilepsy is relatively limited. The goal of this Research Topic is to greatly extend our collective understanding on epidemiology of seizure and epilepsy in different population.

• #96 Editorial: Epidemiology of epilepsy and seizures

  https://pmc.ncbi.nlm.nih.gov/articles/PMC10911047/

  People with epilepsy have increased mortality attributable to both seizure-related and unrelated causes (26, 27). It is estimated around 125,000 people worldwide succumb to epilepsy each year (28). The standardised mortality rates are 1.63.0 times higher than the general population in high-income countries (26), and up to 7.2 times higher in low- and middle-income countries (27). Uncontrolled seizures are known to be associated with increased mortality (29). Sudden unexpected death in epilepsy (SUDEP) and status epilepticus are the most important epilepsy-related causes of mortality (30). […] The incidence of epilepsy varies across different age groups and has a U-shaped bimodal distribution with the highest rates observed in young children and older adults (37). In children, the incidence is typically highest during the first year of life, and then decreases gradually. […] Understanding the epidemiology of epilepsy is crucial for identifying at-risk populations, implementing preventive measures, and improving the overall management of the condition.

• #97 2 Surveillance, Measurement, and Data Collection | Epilepsy Across the Spectrum: Promoting Health and Understanding | The National Academies Press

  https://nap.nationalacademies.org/read/13379/chapter/4

  Improved surveillance of epilepsy will require linked electronic databases that cover large, representative populations. […] A crucial prerequisite for accurate and meaningful surveillance will be the validation of algorithms and methods for different age groups and settings. […] Standardized definitions and methods will allow surveillance data to be compared and actionable. […] The nationwide move to EHRs offers an unprecedented chance to capture data on epilepsy.

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