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Announcements: National Epilepsy Awareness Month --- November 2011

November is National Epilepsy Awareness Month. Epilepsy, which affects approximately 2 million persons in the United States, is characterized by recurrent, unprovoked seizures (1). Although epilepsy can occur at any age, the condition is more likely to begin among children aged <2 years and adults aged ≥65 years (1). Delayed recognition of seizures and subsequent inadequate treatment increases the risk for additional seizures, disability, decreased health-related quality of life, and, in rare instances, death (2--4). Analysis of Behavioral Risk Factor Surveillance System data from 19 states indicated that approximately 1% of adults have active epilepsy, and many might not be receiving the best available medical care (5). As do many persons who live with other chronic disorders, those with epilepsy often face challenges related to medication schedules, management of symptoms, disability, lifestyle limitations, emotional stress, and stigma (6).

The Managing Epilepsy Well (MEW) Network, established in 2007, is composed of persons interested in improving the care for persons with epilepsy (7). MEW Network members, including representatives from U.S. universities, community-based organizations, and CDC, are working together to develop and test self-management programs and tools that promote self-management and improve quality of life for persons with epilepsy.

MEW Network programs available to communities include Web Epilepsy Awareness Support and Education (WebEase), Using Practice and Learning to Increase Favorable Thoughts (UPLIFT), and the Program to Encourage Active Rewarding Lives (PEARLS). WebEase is an Internet self-management program to improve medication adherence, stress management, and sleep (7). UPLIFT is an Internet and telephone program that combines cognitive behavioral therapy with mindfulness to treat depression in persons with epilepsy (8). PEARLS is a home-based, collaborative-care depression treatment program for persons with epilepsy (9).

Interventions currently under development or evaluation by the MEW Network include a self management program that integrates self-management and social support for adults with refractory epilepsy, a decision-support system for clinics to enhance self-management behavior, a consumer-driven self-management program, and a telephone-based depression prevention program. Additional information about the MEW Network is available at http://www.sph.emory.edu/managingepilepsywell and http://www.cdc.gov/epilepsy.

References

  1. Hirtz D, Thurman DJ, Gwinn-Hardy K, Mohamed M, Chaudhuri AR, Zalutsky R. How common are the "common" neurological disorders? Neurology 2007;68:326--37.
  2. Engel J Jr. A greater role for surgical treatment of epilepsy: why and when? Epilepsy Curr 2003;3:37--40.
  3. Begley CE, Famulari M, Annegers JF, et al. The cost of epilepsy in the United States: an estimate from population-based clinical and survey data. Epilepsia 2000;41:342--51.
  4. Gilliam F. Optimizing health outcomes in active epilepsy. Neurology 2002;58(Suppl 5):S9--20.
  5. CDC. Epilepsy surveillance among adults---19 states, Behavioral Risk Factor Surveillance System, 2005. MMWR 2008;57(No. SS-6).
  6. Wagner EH, Austin BT, Davis C, Hindmarsh M, Schaefer J,Bonomi A. Improving chronic illness care: translating evidence into action. Health Aff (Millwood) 2001;20:64--78.
  7. DiIorio C, Bamps Y, Edwards AL, et al. The Prevention Research Centers' Managing Epilepsy Well Network. Epilepsy Behav 2010;19:218--24.
  8. Thompson NJ, Walker ER, Obolensky N, et al. Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT. Epilepsy Behav 2010;19:247--54.
  9. Chaytor N, Ciechanowski P, Miller JW, et al. Long-term outcomes from the PEARLS randomized trial for the treatment of depression in patients with epilepsy. Epilepsy Behav 2011;20:545--9.

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