Special CommunicationEpilepsy across the spectrum: Promoting health and understanding.: A summary of the Institute of Medicine report☆
Highlights
► The Institute of Medicine report examines the public health dimensions of epilepsy. ► It focuses on surveillance, prevention, health care, human services, and education. ► It highlights gaps in epilepsy knowledge, care, and education. ► The report calls for immediate action—across multiple dimensions—to improve lives.
Introduction
Characterized by seizures that are unpredictable in frequency, epilepsy is a common neurological disorder that affects people of all ages, with onset most often occurring in childhood and older adulthood [2], [3]. Epilepsy is a spectrum of disorders1—the epilepsies—with a range of severities, widely differing seizure types and causes, an array of coexisting conditions, and varying impacts on individuals and their families. Epilepsy is the fourth most common neurological disorder in the United States after migraine, stroke, and Alzheimer's disease [4]; it is estimated that 150,000 new cases are diagnosed in the United States annually [4] and that 1 in 26 individuals will develop epilepsy at some point in their lifetime [5].
While seizures are well controlled with medications and other treatment options for the majority of people with epilepsy [6], the impact of epilepsy goes well beyond the seizures. The challenges facing the estimated 2.2 million people with epilepsy in the United States [4] include having access to high-quality health care, becoming informed about and coordinating health care and community services, and dealing with stigma and common public misunderstandings. Living with epilepsy, particularly for people with refractory seizures, can involve challenges in school, uncertainties about social and employment situations, limitations on driving, and questions about independent living. Epilepsy can impose an immense burden on individuals, families, and society; the estimated annual direct medical cost of epilepsy in the United States is $9.6 billion [7], which does not consider community service costs or indirect costs from losses in quality of life and productivity (these indirect costs are estimated to constitute the majority of the cost burden of epilepsy [8]). Further, epilepsy is associated with substantially higher rates of mortality than experienced in the population as a whole [9], with sudden unexpected death in epilepsy (SUDEP) being the most common cause of epilepsy-related deaths [10]. Estimates indicate that 10 years of life are lost for people whose epilepsy has a known cause and 2 years are lost for people with epilepsy from an unknown cause [11]. Additionally, incidence estimates for the number of people with epilepsy who die of SUDEP range from 1 per 10,000 person-years for those individuals who are newly diagnosed to 9 per 1000 person-years for those who are candidates for epilepsy surgery [12].
A significant challenge for people with epilepsy, as well as for the epilepsy field, has been the multitude of ways that epilepsy is perceived and, in many cases, misperceived. The centuries of misperceptions and misinformation about epilepsy have resulted in people with epilepsy being stigmatized [13]. As a consequence, people with epilepsy and their families may be faced with a lack of social support from extended family members; feelings of parental guilt; social isolation, embarrassment, and fear; and discrimination. Although efforts are being made to correct these misconceptions and to better inform people about the epilepsies, doing so remains a challenge.
Throughout its report [1], the committee emphasizes the ways in which epilepsy is a spectrum of disorders. Epilepsy comprises more than 25 syndromes and many types of seizures that vary in severity [14]. Additionally, people who have epilepsy span a spectrum that includes men and women of all ages and of all socioeconomic backgrounds and races/ethnicities, who live in all areas of the United States and across the globe. The impacts on physical health and quality of life encompass a spectrum as well, with individuals experiencing different health outcomes and having a range of activities of daily living that may be affected, including driving, academic achievement, social interactions, and employment. For some people, epilepsy is a childhood disorder that goes into remission (although the seizures may have lifelong consequences), while for others, it is a lifelong burden or a condition that develops later in life or in response to an injury or other health conditions. These many complexities of epilepsy make it a challenging health condition to convey to the general public and to promote understanding and alleviate stigma.
Section snippets
Scope of work
In 2010, the Institute of Medicine (IOM) was asked to examine the public health dimensions of the epilepsies with a focus on four areas:
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public health surveillance and data collection and integration;
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population and public health research;
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health policy, health care, and human services; and
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education for providers, people with epilepsy and their families, and the public.
The committee was asked not to examine biomedical research priorities because the Epilepsy Research Benchmarks, developed in 2000,
A vision for the future
Throughout its report, research priorities, and recommendations, the committee describes its vision for achieving a better understanding of the public health dimensions of the epilepsies and for promoting health and understanding. The committee's vision for the future involves
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epilepsy surveillance efforts that include the development of active and passive data collection systems that are coordinated, comprehensive, accurate, and timely, and that follow standardized methodologies to obtain valid
Increasing the power of data and preventing epilepsy
Comprehensive, timely, and accurate epilepsy surveillance data are needed to provide a better understanding of the burden of the disorder, its risk factors and outcomes, and health services needs. Current data sources provide a patchwork of surveillance activity that substantially limits the ability to understand, plan, and guide the provision of policies related to health care for people with epilepsy. Improvements are necessary to enable informed and effective action in prevention; health
Improving health care
Improving the lives of people with epilepsy and their families, to a large extent, begins with access to high-quality, patient-centered health care that facilitates accurate diagnosis and effective treatments and management. The many challenges that people with epilepsy and their families face are so diverse, even from a medical point of view, that although treatment must continue to be held to high standards, it nevertheless should be tailored to individual patient needs and characteristics,
Improving community resources and quality of life
Because of the range of seizure types and severities and the high rate of comorbid health conditions, the ways in which quality of life is affected by epilepsy vary widely. The burden of seizures and epilepsy, particularly severe forms of epilepsy, can be overwhelming for many people with epilepsy and their families. The social and emotional toll of care can place financial and emotional strains on marriages and families and can alter roles, relationships, and lifestyles. Many speakers at the
Patient and family education
Research consistently demonstrates that many people with epilepsy do not have a solid understanding of basic information about their condition—how it is diagnosed, seizure precipitants or triggers, types of seizures, the purpose and potential side effects of seizure medications, safety concerns, and the risks and potential consequences of seizures [37]. Additionally, the diagnosis of epilepsy, although given to an individual, affects the entire family and its constellation of friendships and
Strengthening stakeholder collaboration
Epilepsy advocacy organizations are working to pull together diverse stakeholders in order to create a stronger, united voice for change. Efforts are being made by a number of organizations to advance research and to improve health care and human services for people with epilepsy and their families. One of the impressive collaborative efforts is the uniting of more than 20 nonprofit organizations and 3 federal agencies in the Vision 20–20 coalition, which focuses on moving the epilepsy field
Engaging people with epilepsy and their families
Among the most persuasive epilepsy advocates and educators are people with epilepsy and their family members who are willing to speak out in order to provide a truer picture of the disorder and its impact. While many people may be willing to play such a role, training and support will help them do so more effectively. This may be the case regardless of whether they are advocating for improvements in care in general terms, working with support groups serving other families, or advocating for a
Conclusion
Much can be done to improve the lives of people with epilepsy. This review of the public health dimensions of the epilepsies highlights numerous gaps in knowledge about and management of epilepsy and also presents opportunities to move the field forward. Improvements in surveillance methods and electronic health records hold promise for more precise information about the epilepsies, which could enable better identification of high-risk groups and better matching of treatments to individuals.
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2023, Current Opinion in Behavioral SciencesKnowledge, awareness, and attitudes towards epilepsy among elementary schoolteachers in the Kingdom of Bahrain
2023, European Journal of Paediatric Neurology
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This summary is an excerpted version of the report's Summary chapter and Chapter 9, which is being reprinted with permission from the National Academies Press. Full-text versions of these chapters and the entire report are available as PDFs at www.iom.edu/epilepsy. The members of the report's authoring committee, the IOM Committee on the Public Health Dimensions of the Epilepsies, are listed in Box 7 at the end of this article.