Epilepsy Centers of Excellence (ECoE)
Epilepsy Awareness Month
November is Epilepsy Awareness Month: The Work is not Done
Epilepsy affects about 2 million people in the U.S, and every year an additional 150,000 people are diagnosed. Over a lifetime, 1 in 10 people will have a seizure and 1 in 26 will develop epilepsy
(1). Traumatic brain injury (TBI), which is common in Veterans, increases the risk of developing epilepsy. Additionally, post-traumatic stress disorder (PTSD) and TBI are associated with psychogenic nonepileptic seizures (PNES). Seizures and epilepsy can be fatal, with sudden unexpected death in epilepsy (SUDEP) affecting about 1 in 1,000 people with epilepsy
(2). The cost of epilepsy care is substantial with estimates for epilepsy-specific annual healthcare costs up to $19,749
(3). Moreover, unfortunately, the stigma of epilepsy persists, with women (and women Veterans) particularly susceptible to negative stereotypes
Leader of Epilepsy Care
The Veterans Health Administration (VHA) has been a leader of epilepsy care. VHA was the first health care organization in the US to establish Epilepsy Centers (1970’s). Advanced epilepsy diagnostics and therapeutics were offered in VA medical centers before university hospitals. With the passage and implementation of Public Law 110-387, mandating establishment of Epilepsy Centers of Excellence (ECoE), the VHA has renewed its commitment to providing state of the art epilepsy and seizures care. There are 4 regional ECoEs, each with 3-5 sites, partner with facilities in a hub-and-spokes model to extend care to Veterans with epilepsy and seizures.
Epilepsy Centers of Excellence (ECoE)
The ECoE’s have significantly impacted national and international standards of epilepsy and PNES management. Leveraging technology, clinical video telehealth (CVT) clinics brings to provider to the patient. For individuals with restricted travel (due to inability to drive), CVT clinics greatly enhance access. Tele-EEG (electroencephalography) clinics ensures local diagnostic testing receives expert interpretation through electronic transfer to an ECoE for review. The ECoEs have helped to define the optimal treatment for PNES with cognitive behavioral therapy (CBT) and ensure access though CVT clinics.
All ECoE sites support a multidisciplinary team including epilepsy trained neurologists (epileptologists), nurses, registered technologists and mental health providers. Many sites also perform advance therapeutics such as neuromodulation treatments and epilepsy surgery. Such a comprehensive approach to epilepsy care is often not found in many academic epilepsy centers.
A major initiative in the ECoE is education of providers and patients about epilepsy. Provider seminars, offer CME to attendees and are available for review at providers’ convenience. Patient seminars address problems faced by persons with epilepsy, such as SUDEP, mental health concerns, medication side effects, etc. These seminars are available to Veterans and the general public at the public facing website
A series of YouTube videos on epilepsy increase awareness about epilepsy and its consequences. A recent Women Veterans with Epilepsy video highlights the unique issues faced by these Veterans and how they can be managed. Finally, the Epilepsy Manual 2nd Ed, written by ECoE providers, is available in PDF form on the ECoE website.
The ECoE program is highly active in basic science and clinical research related to epilepsy and PNES. Clinical trials of devices and drugs have been performed in the ECoEs and other VHA facilities. A VA Cooperative Study is being planned on the treatment of PNES. A full listing of the research activities of the ECoE’s is available in the annual reports
The ECoEs have partnered with nonprofits and other governmental agencies to increase awareness of epilepsy and seizures. Partnerships with the Epilepsy Foundation, the Anita Kaufmann Foundation fundraisers (8), the Department of Defense and Centers for Disease Control and prevention have enhanced awareness.
The ECoEs recommit to our mission of improving the lives of Veterans with epilepsy and seizures. Each ECoE site has special programs and events planned for November. The ECoE’s join the community at large in helping to defeat this illness that affects so many people in the prime of their lives.
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