Epilepsy across the spectrum: Promoting health and understanding.

Abstract

Approximately 1 in 26 people will develop epilepsy at some point in their lives. Although epilepsy is one of the nation’s most common neurological disorders, public understanding is limited. A complex spectrum of disorders, epilepsy affects an estimated 2.2 million people in the United States. Living with epilepsy is about more than just seizures; it is often defined in practical terms, such as challenges, uncertainties, and limitations in school, social situations, employment, driving, and independent living. People with epilepsy are also faced with health and community services that are fragmented, uncoordinated, and difficult to obtain. The Institute of Medicine’s report, Epilepsy Across the Spectrum: Promoting Health and Understanding [1], examines the public health dimensions of epilepsy with a focus on: (a) public health surveillance and data collection and integration; (b) population and public health research; (c) health policy, health care, and human services; and (d) education for providers, people with epilepsy and their families, and the public. The report’s recommendations range from the expansion of collaborative epilepsy surveillance efforts, to the independent accreditation of epilepsy centers, to the coordination of public awareness efforts, to the engagement of people with epilepsy and their families in education, dissemination, and advocacy activities. Given the current gaps in epilepsy knowledge, care, and education, there is an urgent need to take action—across multiple dimensions—to improve the lives of people with epilepsy and their families. The realistic, feasible, and action-oriented recommendations in this report can help enable short- and long-term improvements for people with epilepsy.

Mortality Risks in New-Onset Childhood Epilepsy

“…11 Parents, however, generally do want to be informed of these risks, 41 and parents who have lost children wish they had been offered such information. 10 Although this reluctance and unease among neurologists will surely change, 42 it seems that pediatricians who have overcome the barriers of discussing such risks with their families and young patients might be well positioned, if provided with reasonable information about SUDEP, to broach these topics and to address parents' concerns. Ways of preventing SUDEP are unclear and not as advanced as with SIDS.…”

Quality improvement in neurology

“…It is estimated that 2.2 million people in the United States are diagnosed with epilepsy, and 150,000 new cases of epilepsy are diagnosed in the United States annually. 1 However, epilepsy prevalence might be underestimated due to numerous social issues that accompany a diagnosis of epilepsy. 2 People with epilepsy have poorer overall health status, impaired intellectual and physical functioning, and a greater risk for accidents and injuries.…”

Linking MRI post-processing with Magnetic source imaging in MRI-negative epilepsy

“…This existing gap in offering surgical therapy to MRI-PFE cannot be overstated. [65][66][67] Enhancing the yield of noninvasive testing is paramount given that some MRI-patients, who are found to have concordant MSI/MAP+ results, may eventually be regarded as more favorable candidates and be offered potentially curative epilepsy surgery.…”