Levels of epilepsy care were developed by the National Association of Epilepsy Centers (NAEC). Level 4 epilepsy centers, such as the Epilepsy Center at UC San Diego, provide the highest level of care to people with epilepsy and other seizure disorders. Advanced imaging at UC San. That's why the National Association of Epilepsy Centers (NAEC) has accredited the Epilepsy Center at Nationwide Children's as a Level 4 epilepsy program—a. NAEC recognizes four levels of epilepsy care which are described in NAEC's Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy.
In these cases, it's likely that there's a genetic influence. Researchers have linked some types of epilepsy to specific genes, but for most people, genes are only part of the cause of epilepsy. Certain genes may make a person more sensitive to environmental conditions that trigger seizures. Having a seizure at certain times can lead to circumstances that are dangerous to yourself or others. A seizure that causes either loss of awareness or control can be dangerous if you're driving a car or operating other equipment.
Many states have driver's license restrictions related to a driver's ability to control seizures and impose a minimum amount of time that a driver be seizure-free, ranging from months to years, before being allowed to drive. Seizures during pregnancy pose dangers to both mother and baby, and certain anti-epileptic medications increase the risk of birth defects. If you have epilepsy and you're considering becoming pregnant, talk to your doctor as you plan your pregnancy.
Most women with epilepsy can become pregnant and have healthy babies. You'll need to be carefully monitored throughout pregnancy, and medications may need to be adjusted. It's very important that you work with your doctor to plan your pregnancy. People with epilepsy are more likely to have psychological problems, especially depression, anxiety and suicidal thoughts and behaviors.
Problems may be a result of difficulties dealing with the condition itself as well as medication side effects. This condition occurs if you're in a state of continuous seizure activity lasting more than five minutes or if you have frequent recurrent seizures without regaining full consciousness in between them. People with status epilepticus have an increased risk of permanent brain damage and death. People with epilepsy also have a small risk of sudden unexpected death. The cause is unknown, but some research shows it may occur due to heart or respiratory conditions.
People with frequent tonic-clonic seizures or people whose seizures aren't controlled by medications may be at higher risk of SUDEP. Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission. This content does not have an English version.
This content does not have an Arabic version. Overview Epilepsy is a central nervous system neurological disorder in which brain activity becomes abnormal, causing seizures or periods of unusual behavior, sensations, and sometimes loss of awareness.
Request an Appointment at Mayo Clinic. References The epilepsies and seizures: National Institute of Neurological Disorders and Stroke. Accessed May 24, Evaluation and management of the first seizure in adults. Centers for Disease Control and Prevention. Accessed June 13, Daroff RB, et al. Bradley's Neurology in Clinical Practice. Accessed May 5, Seizures and epilepsy in children: Classification, etiology, and clinical features.
Aminoff MJ, et al. Accessed June 26, Ferri's Clinical Advisor Overview of the management of epilepsy in adults. Sudden unexpected death in epilepsy. Neurological diagnostic tests and procedures fact sheet. Haider HA, et al. Neuroimaging in the evaluation of seizures and epilepsy. Initial treatment of epilepsy in adults. Initial treatment and monitoring.
Crepeau AZ, et al. Management of adult onset seizures. Current and future clinical applications. Romanelli P, et al. Many level 4 centers are actively involved in clinical trials and are well aware of trials conducted in other level 4 centers to make patient referrals.
Data for this analysis were collected from two surveys sent to NAEC membership in Each year, NAEC asks its members to provide information on their personnel, facilities, and services. In , centers completed this survey.
The NAEC annual designation survey has an extremely high response rate and provides information from approximately 90 percent of the specialized epilepsy centers in the United States. This survey see below sought additional information on numbers of patients seen annually, referral patterns, waiting times, and follow-up care. Forty-seven centers participated in this survey. The supplemental survey was blinded as to which centers responded so that the identity and level of the centers are not known.
Nevertheless, the data are likely to be generalizable in a broad sense. Based on the information gathered in its designation survey, NAEC recognized level 4 and 18 level 3 epilepsy centers. On average, level 3 centers reported having one to three epileptologists and a neurosurgeon. Level 4 centers, on average, had three to six full-time epileptologists and two neurosurgeons.
Level 4 centers tended to have a full-time advanced practice nurse and neuropsychologist, while most level 3 centers had part-time personnel in these positions. As part of the annual designation survey, centers reported the number of hospital inpatient cases of vEEG. This can be used as a proxy for the annual number of inpatient admissions for a comprehensive epilepsy evaluation.
Level 3 and 4 centers reported a total of 3, surgeries. Overall, these data suggest that only a minority of the 1 million Americans with refractory epilepsy are seen at an epilepsy center in any 1 year. If there are approximately epilepsy centers nationally, then approximately , unique patients, or 22 percent of Americans with refractory epilepsy, are seen at these centers annually. Despite recommendations to the contrary, less than a quarter of patients with uncontrolled seizures see an epilepsy specialist.
The data also show that an even smaller number of patients with refractory epilepsy are admitted to an EMU for a comprehensive evaluation. Using a median number of vEEG cases at the level 4 centers as a proxy for the number of inpatient admissions to the centers, we can extrapolate somewhere between 50, and 60, admissions to EMUs in the United States. This suggests that an even smaller number of patients are being fully evaluated and effectively treated.
Level 3 and 4 centers reported 3, surgeries annually. It is likely that epilepsy surgery takes place at a few centers that are not members of NAEC or did not report data.
However, even a conservative estimate would be that 4, surgeries per year are performed in the United States. This suggests that surgery is underutilized because epidemiological data suggest that , to , people in the United States are candidates for epilepsy surgery. The data on referral sources for epilepsy centers are difficult to interpret.
The surveys showed that patients are referred to epilepsy centers almost evenly by primary care physicians and neurologists. However, the high numbers of primary care referrals may be due to the fact that many insurers require referrals to be formally generated by primary care providers even when it is a neurologist who makes the recommendation for referral. The data overall suggest a shortage of epilepsy specialists. Waiting times to see a specialist at a center or to be admitted to the hospital for an epilepsy evaluation are 3 to 4 weeks.
The data also show that many patients receive their ongoing epilepsy care at the center. This means that epilepsy clinics rapidly fill up with returning patients and leave few appointments available for new patient evaluations.
This is reflected in the average 3-week waiting time to see an epileptologist. As many of you know, the Institute of Medicine IOM is currently undertaking a review of the public health dimensions of the epilepsies. The brief survey should not take you more than a few minutes to complete, but if possible, please pull data from your center to complete the survey. We recognize that some answers may be estimates of the typical experience at your center. Thanks in advance for completing the survey.
We want to provide IOM with the best possible information about the state of epilepsy care in the United States and know that this data will help that effort. Turn recording back on. National Center for Biotechnology Information , U. C Data on Specialized Epilepsy Centers: Total numbers are given below: On average, each center saw 1, unique patients with a diagnosis of epilepsy.
On average, each center had 3, total outpatient visits where the patient was seen by an epileptologist. Waiting time for a new patient to see an epilepsy specialist averaged 32 days, with a median of 21 days.
Waiting time for an inpatient evaluation to the center's EMU averaged 25 days, with a median of 21 days. Of those patients admitted to the EMU for a pre-surgical evaluation, 29 percent went on to have epilepsy surgery. Referral patterns varied significantly across the centers surveyed. Across all centers, the average percentage of patients referred from each source was as follows:. On average, two-thirds of patients
Epilepsy Society neurologist on BBC Radio 4 to discuss brain seizures
Overview. Epilepsy is a central nervous system (neurological) disorder in which brain activity becomes abnormal, causing seizures or periods. Our Epilepsy Center is recognized by the National Association of Epilepsy Centers (NAEC) as a Level 4 epilepsy center. Download the NAEC infographic for. Epilepsy is a brain disorder that happens when certain nerve cells in your brain misfire. It causes seizures, which can affect your behavior or the.