Improving the Lives of People with One of the Nation’s Most Common Neurological Conditions
At A Glance 2011
Epilepsy: Widely Recognized, Poorly Understood
What Is Epilepsy?
Epilepsy is a chronic neurological condition characterized by recurrent seizures. A seizure happens when abnormal electrical activity in the brain causes an involuntary change in body movement or function, sensation, awareness, or behavior. Seizures can vary from a momentary disruption of the senses to short periods of unconsciousness or staring spells to convulsions. Some people have only one type of seizure, while others have more than one type. The term epilepsy can be used interchangeably with the term seizure disorder. Epilepsy is a chronic condition and cannot be transmitted from person to person.
What Causes Epilepsy?
Epilepsy can be caused by many different conditions that affect a person's brain. Examples of these conditions include stroke, head trauma, complications during childbirth, infections (such as meningitis, encephalitis, cysticercosis, or brain abscess), and certain genetic disorders. Often, no definite cause can be found.
Why Is Epilepsy a Public Health Problem?
Epilepsy affects about 2 million people in the United States and accounts for $15.5 billion in direct costs (medical) and indirect costs (lost or reduced earnings and productivity) each year. More than one-third of people with epilepsy continue to have seizures despite treatment. Children younger than age 2 and adults older than age 65 are particularly vulnerable because the risk factors for epilepsy are more common in these age groups. About 10% of Americans will experience a seizure sometime during their lives. About 3% will receive a diagnosis of epilepsy by age 80.
Delayed recognition of seizures and inadequate treatment, which may result from lack of specialty care, increase a person's risk of subsequent seizures, brain damage, disability, and death from injuries incurred during a seizure. Epilepsy is a widely recognized health condition, but one that is poorly understood, even among people who know someone with the disorder. Lack of knowledge about the causes of epilepsy has been associated with negative attitudes and beliefs. Lack of understanding about epilepsy is a leading cause of stigma in the workplace and in schools.
What Can Be Done to Improve the Lives of People With Epilepsy?
In 2003, the second National Conference on Public Health and Epilepsy, Living Well With Epilepsy II, brought together experts in the field, as well as people with epilepsy and their families. Participants discussed the need for early recognition, diagnosis, and treatment of epilepsy; advances in epidemiology and surveillance; better self-management; and improved quality of life. Conference participants also called for
Better access to specialty care and comprehensive systems of care, as well as improved early detection and treatment.
Established criteria to determine quality of care in epilepsy.
Better understanding of the diagnosis and treatment of the consequences of epilepsy, especially in the areas of mental health and cognition.
Methods and systems to monitor trends related to critical issues, such as disease burden, mortality risks, and incidence and prevalence in diverse populations.
Public education to improve people's ability to recognize seizures and give first aid.
Systems and models of care that foster empowerment and independence for people with epilepsy and support the efforts of people with epilepsy to improve seizure control and create a good quality of life.
Research and communication approaches to combat the stigma associated with epilepsy, which will improve community awareness and the quality of life and care of people with epilepsy.
CDC's National Leadership
The Epilepsy Program at CDC has steadily increased its ability to effectively address public health issues related to epilepsy. The program works to protect the health of people living with epilepsy, improve their quality of life, and decrease the stigma associated with the disorder. To achieve these goals, the program has established national and local partnerships to increase public awareness and deliver targeted messages. The Epilepsy Program supports activities in several key areas, including communication and education, research, and self-management.
Communication and Education
CDC has a long-standing partnership with the national Epilepsy Foundation to conduct multifaceted public education and awareness campaigns. These campaigns are designed to increase awareness about and acceptance of people with epilepsy and to counteract the social stigma associated with this disorder through education and community programs. Past campaigns have focused on underserved population groups, including African Americans, women, and young people. One recent campaign expanded its focus on African American and Hispanic communities and provided African Americans with health information through the Web and in print as part of the Know the Difference campaign. Other CDC activities in this area included the following:
Making the educational curriculum Seizures and You: Take Charge of the Facts a permanent part of health programs in public middle schools and high schools.
Expanding the reach of a training program for school employees by adapting its materials for day care providers, camp counselors, and preschool teachers.
Expanding the use of tested curricula for law enforcement and emergency medical services personnel on how to protect the safety and rights of people having seizures while also ensuring the safety of first responders (available online at http://www.epilepsyfoundation.org/firstresponders).
Epidemiological and Prevention Research
CDC is supporting epidemiological studies to define the incidence and prevalence of epilepsy in various communities and populations in the United States. These studies also are being used to identify (1) risk factors and the severity of epilepsy in minority communities, (2) health disparities and contributing factors among people with epilepsy, and (3) process and outcome measures that can be used to define optimum care.
Since 1998, some state health departments have used Behavioral Risk Factor Surveillance System surveys to estimate self-reported epilepsy prevalence and study relationships between associated behavioral risk factors, chronic disease comorbidity, and health-related quality of life. Nineteen states have collected data on the prevalence of epilepsy in adults who report a history of epilepsy. Among these 19 states, 13 have collected more detailed information about symptoms, impairments in health-related quality of life, access to care, and current treatment (see charts on pages 2 and 4).
Researchers also are using Medicare claims data to estimate prevalence and treatment patterns in older adults. In addition, researchers are studying the prevalence of developmental and other disabilities among children with epilepsy who live in rural Kansas.
Self-Management and Mental Health
Since 2007, CDC has supported the Managing Epilepsy Well (MEW) Network. The mission of the MEW Network is to advance the science related to epilepsy self-management by supporting and conducting collaborative research with community stakeholders and then sharing the findings of this research as widely as possible. The network includes researchers from four universities in Georgia, Michigan, Texas, and Washington who develop and evaluate interventions, conduct research studies, and provide training. Current projects include two programs designed to prevent or treat depression in people with epilepsy—UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) and PEARLS (Program to Encourage Active, Rewarding Lives for Seniors). MEW researchers also have developed an online program called WebEase (Web Epilepsy Awareness Support and Education) that is designed to help people manage their condition.
CDC will continue to work with the Epilepsy Foundation to expand programs that focus on different groups, including racial and ethnic minorities, students and staff of middle and high schools, parents of teenagers with epilepsy, people who are unemployed and underemployed, military veterans, older adults, law enforcement personnel, and emergency responders. In 2011, the MEW Network will expand its research, evaluation, and dissemination activities. Additional projects include developing a multisite intervention to prevent depression and creating a standard measure of epilepsy self-management.
People with epilepsy have a higher risk of death from certain comorbidities (e.g., heart disease) and injuries (unintentional and suicide) that are often associated with this condition. They also are at risk of a phenomenon known as sudden unexpected death in epilepsy. To learn more about deaths associated with epilepsy, CDC is working with the National Institute of Neurological Disorders and Stroke to develop a population-based epidemiologic research and surveillance agenda.
The Institute of Medicine has convened an expert committee to identify and recommend strategies to address priorities in the areas of public health, health care and human services, health literacy, and public awareness for epilepsy. CDC is cosponsoring this effort with the U.S. Department of Health and Human Services, other federal agencies, and other partners. The resulting report is expected to be released in 2011.
In 2010, standardized questions about epilepsy were added to the National Health Interview Survey. Analysis of the data from this survey will provide, for the first time, national estimates for lifetime epilepsy and active epilepsy. The data also will allow researchers to compare the health status, comorbidities, and risk factors of adults with epilepsy with those of the general U.S. population.
For more information please contact
the Centers for Disease Control and Prevention
National Center for Chronic Disease Prevention and Health Promotion
4770 Buford Highway NE, Mail Stop F-76, Atlanta, GA 30341-3717
Telephone: 800-CDC-INFO (232-4636) • TTY: 888-232-6348