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1 Introduction
Pages 19-48

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From page 19...
... Epilepsy is a spectrum of disorders -- the epilepsies -- with a range of severities, widely differing seizure types and causes, and varying impacts on individuals and their families. Beyond actually living with epilepsy, its seizures, and coexisting health conditions, the challenges facing the millions of people living with epilepsy include having access to high-quality health care; learning about and coordinating health care and educational, vocational, independent living, and other community services; and dealing with stigma and common public misunderstandings.
From page 20...
... 2 Data are in 2004 dollars. As discussed later in this chapter and in Chapter 4, estimates of the cost burden of epilepsy vary widely and more data are needed on the use of health care services and on indirect costs.
From page 21...
... The committee was asked not to examine biomedical research priorities because the Epilepsy Research Benchmarks, developed in 2000, continue to be updated by the National Institute of Neurological Disorders and Stroke (NINDS) and collaborating agencies and organizations (NINDS, 2007a,b, 2010)
From page 22...
... This report provides the committee's findings, research priorities, and recommendations and documents the evidence base. The report was written for a broad audience, including people with epilepsy; family members; health care and human services providers; local, state, and national policy makers; researchers; and foundations and nonprofit organizations.
From page 23...
... , National Institute on Aging (NIH) , Office of the Assistant Secretary for Health, Office of the Assistant Secretary for Planning and Evaluation, and Office on Women's Health Vision 20-20 nonprofit organization sponsors: American Epilepsy Society, Citizens United for Research in Epilepsy, Dravet.org, Epilepsy Foundation, Epilepsy Therapy Project, Finding A Cure for Epilepsy and Seizures, Hemispherectomy Foundation, International League Against Epilepsy, National Association of Epilepsy Centers, Preventing Teen Tragedy, Rasmussen's Encephalitis Children's Project, and Tuberous Sclerosis Alliance ations, and potential data sources that could be used to build the knowledge base so as to better focus future efforts in health policy, research, and public health are discussed in Chapter 2.
From page 24...
... EPILEPSY IS A FREQUENTLY OCCURRING AND COSTLY NEUROLOGICAL DISORDER Incidence and Prevalence in the United States Epilepsy is the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer's disease (Hirtz et al., 2007)
From page 25...
... For older adults, epilepsy may contribute to the health burden of other neurological disorders, such as stroke or dementia, and may hinder safety and independent living. These limitations can pose considerable economic, social, and emotional burdens on individuals with epilepsy and their families.
From page 26...
... 26 EPILEPSY ACROSS THE SPECTRUM 250 Rate per 100,000 200 150 100 50 10 20 30 40 50 60 70 80 90 Age (years) FIGURE 1-1a Incidence of epilepsy by age -- composite of 12 studies in developed countries, 1988–2005.
From page 27...
... , and indirect costs due to lost productivity from unemployment, underemployment, and premature mortality. Indirect costs -- the social costs resulting from effects on employment, productivity, and independent living -- are considerably higher than direct medical costs for many types of epilepsy.
From page 28...
... 2.9 13 Parkinson's disease 1.7 Posttraumatic stress disorder 0.5 Multiple sclerosis 1.2 14 Multiple sclerosis 1.5 Multiple sclerosis 0.3 Parkinson's disease 1.0 aExamples of MNS disorders under the purview of the Grand Challenges in Global Mental Health initiative. bWorld Bank criteria for income (2009 gross national income per capita)
From page 29...
... Common comorbidities that occur in epilepsy include cognitive dysfunction, such as memory, attention, or concentration problems; mental health conditions, such as depression or anxiety; and somatic comorbidities, such as sleep disorders, migraines, or cardiovascular disease. Other health problems can occur as a result of ongoing seizures, the cause of the epilepsy, or problems associated with the treatment, such 6 An epilepsy seizure has been defined as a "transient occurrence of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain" (Fisher et al., 2005, p.
From page 30...
... . Goals for epilepsy efforts focus on preventing seizures in people at risk, controlling seizures in those with epilepsy, eliminating side effects of treatments, and helping people with epilepsy and their families achieve a high quality of life.
From page 31...
... . Throughout the centuries, associations of seizures with mental health conditions, witchcraft, and demonic or divine possession have resulted in terminology with negative and sensationalized connotations and led to cultural and societal beliefs, perceptions, and stereotypes about epilepsy that can be difficult to modify.
From page 32...
... , epilepsy seizures (to replace "epileptic seizures") , and "seizure-like events with a psychological basis" (rather than psychogenic, non-epileptic seizures)
From page 33...
... , and seizure types. Table 1-3 provides an overview of a few of the many epilepsy syndromes.
From page 34...
... . In clinical care this generally involves seizures lasting longer than 5 minutes.
From page 35...
... Seizures are generally myoclonic jerks that occur when well controlled with medications waking up Temporal lobe Seizures include focal seizures May start in childhood, but most epilepsy with or without out impairment common in adolescence or early of consciousness, including adulthood. Varying responses to auras medications; however, seizures that arise from one temporal lobe respond well to surgery Dravet syndrome Begins with frequent febrile Genetic disorder with onset seizures with later myoclonic typically during the first year seizures; often children have of life; degree of cognitive poor development of language impairment may stabilize or and motor skills improve slightly with age depending on the frequency of the seizures Lennox-Gastaut Involves multiple types of Accounts for approximately syndrome seizures including tonic and 2 to 5 percent of childhood atonic seizures; children often epilepsies; difficult to control have impaired intellectual with medications functioning and developmental delays aAlso termed "rolandic epilepsy." SOURCES: Epilepsy.com, 2011a,b,d,e,f,g; NINDS, 2011b.
From page 36...
... In a study of newly diagnosed people with epilepsy, using both older and more recently introduced seizure medications, up to 63 percent of individuals became seizure free during treatment (Kwan and Brodie, 2000) ; seizures in approximately half of patients were controlled with the first seizure medication tried.
From page 37...
... provide specialty care and are generally a part of an epilepsy center, which has the expertise and facilities to provide thorough patient assessments and, if indicated, surgical and device consultations and treatment, as well as connections to other health professionals (detailed below) , as needed.
From page 38...
... Beyond the seizures, comorbid health conditions and epilepsy-related limitations can have an impact on many aspects of health and quality of life. Living with epilepsy, particularly refractory epilepsy, can involve challenges in school, uncertainties about social and employment situations, limitations on driving, and questions about independent living.
From page 39...
... Although it is not within the purview of this report to examine the biomedical research agenda, it is important to acknowledge that recent biomedical research advances in epilepsy include improving the understanding of the mechanisms of participate in patient-centered care; it is "the sum total of steps taken and processes used by a person to control seizures and manage the effects of having a seizure disorder" (DiIorio, 1997, p.
From page 40...
... . Sponsored by the Centers for Disease Control and Prevention, the Epilepsy Foundation, the American Epilepsy Society, the National Association of Chronic Disease Directors, and the National Association of Epilepsy Centers, the Living 11 Actual spending in fiscal year 2011 was $152 million (NIH, 2012)
From page 41...
... Other examples are provided throughout the report of the many organizations and individuals working to prevent, treat, and cure epilepsy and its comorbidities: • The Vision 20-20 coalition was formed in 2004 and originally brought together five nonprofit organizations and one federal agency focused on epilepsy research. Initially the organizations shared progress on their own initiatives and funding resources and explored areas for collaboration.
From page 42...
... Data are lacking that could improve epilepsy care. Accurate, timely • data on the extent and consequences of epilepsy and comorbid conditions and on health care and community services use and outcomes are sorely needed to make improvements in epilepsy prevention; diagnosis; health care access, quality, and value; and community services.
From page 43...
... , CDC (Centers for Disease Control and Prevention) , Chronic Disease Directors, Epilepsy Foundation, and NAEC (National Association of Epilepsy Centers)
From page 44...
... Epilepsy Research 93(2-3)
From page 45...
... I: Descriptions and subjec tive perceptions. Epilepsy Research 41(1)
From page 46...
... 2007b. Update to NINDS epilepsy research benchmarks.
From page 47...
... PowerPoint presented at the IOM Meeting on Public Health Dimensions of the Epilepsies, Washington, DC, January 10. http://iom.edu/~/media/Files/Activity% 20Files/Disease/Epilepsy/Thurman%202.pdf (accessed October 19, 2011)


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