Managing Epilepsy Well: Emerging e-Tools for epilepsy self-management

The Managing Epilepsy Well (MEW) Network was established in 2007 by the Centers for Disease Control and Prevention Epilepsy Program to expand epilepsy self-management research. The network has employed collaborative research strategies to develop, test, and disseminate evidence-based, community-based, and e-Health interventions (e-Tools) for epilepsy self-management for people with epilepsy, caregivers, and health-care providers. Since its inception, MEW Network collaborators have conducted formative studies (n=7) investigating the potential of e-Health to support epilepsy self-management and intervention studies evaluating e-Tools (n=5). The MEW e-Tools (the MEW website, WebEase, UPLIFT, MINDSET, and PEARLS online training) and affiliated e-Tools (Texting 4 Control) are designed to complement self-management practices in each phase of the epilepsy care continuum. These tools exemplify a concerted research agenda, shared methodological principles and models for epilepsy self-management, and a communal knowledge base for implementing e-Health to improve quality of life for people with epilepsy.

[1]  Brian T. Austin,et al.  Elements of Effective Chronic Care: A Model for Optimizing Outcomes for the Chronically Ill , 2000, Epilepsy & Behavior.

[2]  J. Buelow,et al.  Self-Management of Epilepsy , 2000 .

[3]  C. Diclemente,et al.  Group Treatment for Substance Abuse: A Stages-of-Change Therapy Manual , 2001 .

[4]  A. Bandura.  Social Foundations of Thought and Action: A Social Cognitive Theory , 1985 .

[5]  K. Glanz,et al.  Health Behavior and Health Education , 1990 .

[6]  A. Simons,et al.  Cognitive therapy and pharmacotherapy. Singly and together in the treatment of depression. , 1984, Archives of general psychiatry.

[7]  Ross Shegog,et al.  Socioeconomic status and self-management in epilepsy: Comparison of diverse clinical populations in Houston, Texas , 2010, Epilepsy & Behavior.

[8]  J Zvárová,et al.  Analysis of data about epileptic patients using the GUHA method. , 1997, International journal of medical informatics.

[9]  Bess H. Marcus,et al.  Communication technology and health behaviour change , 2002 .

[10]  Nancy J. Thompson,et al.  Formative and process evaluations of a cognitive-behavioral therapy and mindfulness intervention for people with epilepsy and depression , 2010, Epilepsy & Behavior.

[11]  Frances McCarty,et al.  WebEase: Development of a Web-Based Epilepsy Self-Management Intervention , 2008, Preventing chronic disease.

[12]  Jodi G. Daniel,et al.  A national action plan to support consumer engagement via e-health. , 2013, Health affairs.

[13]  W M Grove,et al.  Cognitive therapy and pharmacotherapy for depression. Singly and in combination. , 1992, Archives of general psychiatry.

[14]  Yvan Bamps,et al.  Results of a research study evaluating WebEase, an online epilepsy self-management program , 2011, Epilepsy & Behavior.

[15]  L. Hernandez.  Health literacy, eHealth, and communication : putting the consumer first : workshop summary , 2009 .

[16]  Dominik Aronsky,et al.  Review Paper: Biomedical Informatics Applications for Asthma Care: A Systematic Review , 2006, J. Am. Medical Informatics Assoc..

[17]  I. Ajzen.  The theory of planned behavior , 1991 .

[18]  D. Schomer,et al.  A Descriptive Analysis of Seizure Events Among Adults Who Participated in a Computer‐Based Assessment , 2008, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[19]  Jon Kabat-Zinn,et al.  Wherever you go there you are , 1994 .

[20]  K. Glanz,et al.  Health behavior and health education : theory, research, and practice , 1991 .

[21]  Nikki A. Hawkins,et al.  News from the CDC: translating epilepsy self-management research to practice , 2012, Translational behavioral medicine.

[22]  Sheana S Bull,et al.  Interactive behavior change technology. A partial solution to the competing demands of primary care. , 2004, American journal of preventive medicine.

[23]  Catharyn T. Liverman,et al.  A Summary of the Institute of Medicine Report: Epilepsy Across the Spectrum: Promoting Health and Understanding , 2012 .

[24]  C. Vandelanotte,et al.  Meta-analysis of internet-delivered interventions to increase physical activity levels , 2012, International Journal of Behavioral Nutrition and Physical Activity.

[25]  C. Escoffery,et al.  Evaluation of WebEase: an epilepsy self-management Web site. , 2008, Health education research.

[26]  Paul Ciechanowski,et al.  PEARLS depression treatment for individuals with epilepsy: A randomized controlled trial , 2010, Epilepsy & Behavior.

[27]  Audie A Atienza,et al.  A review of eHealth interventions for physical activity and dietary behavior change. , 2007, American journal of preventive medicine.

[28]  Frances McCarty,et al.  Use of computers and the Internet for health information by patients with epilepsy , 2008, Epilepsy & Behavior.

[29]  C. Iorio.  Epilepsy Self-Management , 1997 .

[30]  K. Dobson,et al.  Cognitive therapy of depression: pretreatment patient predictors of outcome. , 2002, Clinical psychology review.

[31]  Ross Shegog,et al.  The Prevention Research Centers’ Managing Epilepsy Well Network , 2010, Epilepsy & Behavior.

[32]  C. Diiorio,et al.  Social support for self-management behaviors among people with epilepsy: A content analysis of the WebEase program , 2012, Epilepsy & Behavior.

[33]  Brian T. Austin,et al.  Improving chronic illness care: translating evidence into action. , 2001, Health affairs.

[34]  E. So,et al.  The Cost of Epilepsy in the United States: An Estimate from Population‐Based Clinical and Survey Data , 2000, Epilepsia.

[35]  John W. Miller,et al.  A comparison of epilepsy self-management needs: Provider and patient perspectives , 2012, Epilepsy & Behavior.

[36]  R. DeRubeis,et al.  Cognitive therapy vs medications in the treatment of moderate to severe depression. , 2005, Archives of general psychiatry.

[37]  Bryant T Karras,et al.  Mobile eHealth Interventions for Obesity: A Timely Opportunity to Leverage Convergence Trends , 2005, Journal of medical Internet research.

[38]  E. Deci,et al.  Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. , 2000, The American psychologist.

[39]  B. Manteuffel,et al.  Self-Efficacy and Social Support in Self-Management of Epilepsy , 1992, Western journal of nursing research.

[40]  Bo Lu,et al.  Serious psychological distress and health outcomes for persons with epilepsy in poverty , 2009, Seizure.

[41]  Lisa M. Caylor,et al.  Managing epilepsy well: Self-management needs assessment , 2011, Epilepsy & Behavior.

[42]  N. Clark,et al.  Fostering epilepsy self management: The perspectives of professionals , 2010, Epilepsy & Behavior.

[43]  Jerri L. Ledford,et al.  Google Analytics , 2006 .

[44]  Nancy J. Thompson,et al.  Distance delivery of mindfulness-based cognitive therapy for depression: Project UPLIFT , 2010, Epilepsy & Behavior.

[45]  Kate Lorig,et al.  Living a healthy life with chronic conditions : self-management of heart disease, arthritis, diabetes, asthma, bronchitis, emphysema & others , 2006 .

[46]  Steven D. Hollon,et al.  Cognitive therapy and pharmacotherapy for depression. , 1991 .

[47]  S. Hollon,et al.  Comparative efficacy of cognitive therapy and pharmacotherapy in the treatment of depressed outpatients , 1977, Cognitive Therapy and Research.

[48]  C. Escoffery,et al.  Content and Characteristics of Goals Created During a Self-Management Intervention for People With Epilepsy , 2009, The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses.

[49]  Noreen M Clark,et al.  Management of chronic disease by patients. , 2003, Annual review of public health.

[50]  D. Hesdorffer,et al.  Sociodemographic disparities in epilepsy care: Results from the Houston/New York City health care use and outcomes study , 2009, Epilepsia.