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The Managing Epilepsy Well Network:

Advancing Epilepsy Self-Management
      Epilepsy, a complex spectrum of disorders, affects about 2.9 million people in the U.S. Similar to other chronic disorders, people with epilepsy face challenges related to management of the disorder, its treatment, co-occurring depression, disability, social disadvantages, and stigma. Two national conferences on public health and epilepsy (1997, 2003) and a 2012 IOM report on the public health dimensions of epilepsy highlighted important knowledge gaps and emphasized the need for evidence-based, scalable epilepsy self-management programs. The Centers for Disease Control and Prevention translated recommendations on self-management research and dissemination into an applied research program through the Prevention Research Centers Managing Epilepsy Well (MEW) Network. MEW Network objectives are to advance epilepsy self-management research by developing effective interventions that can be broadly disseminated for use in people’s homes, healthcare providers’ offices, or in community settings. The aim of this report is to provide an update on the MEW Network research pipeline, which spans efficacy, effectiveness, and dissemination. Many of the interventions use e-health strategies to eliminate barriers to care (e.g., lack of transportation, functional limitations, and stigma). Strengths of this mature research network are the culture of collaboration, community-based partnerships, e-health methods, and its portfolio of prevention activities, which range from efficacy studies engaging hard-to-reach groups, to initiatives focused on provider training and knowledge translation. The MEW Network works with organizations across the country to expand its capacity, help leverage funding and other resources, and enhance the development, dissemination, and sustainability of MEW Network programs and tools. Guided by national initiatives targeting chronic disease or epilepsy burden since 2007, the MEW Network has been responsible for more than 43 scientific journal articles, two study reports, seven book chapters, and 62 presentations and posters. To date, two programs have been adopted and disseminated by the national Epilepsy Foundation, state Epilepsy Foundation affiliates, and other stakeholders. Recent expansion of the MEW Network membership will help to extend future reach and public health impact.

      Targeting the Population Burden of Epilepsy

      Epilepsy is a common neurologic condition affecting about 2.9 million people in the U.S.

      CDC. Epilepsy fast facts. www.cdc.gov/epilepsy/basics/fast-facts.htm. Published 2016. Accessed March 23, 2016.

      Despite treatment advances and improvements in public awareness, people with epilepsy experience significant health and social disparities and stigma—prompting recent renewed public health focus by DHHS.
      • Koh H.K.
      • Kobau R.
      • Whittemore V.H.
      • et al.
      Toward an integrated public health approach for epilepsy in the 21st century.
      Because of structural and social barriers (e.g., transportation, stigma), many people with epilepsy are unemployed, increasing their risk of social marginalization and economic hardship. To minimize epilepsy burden, the Centers for Disease Control and Prevention (CDC) has supported the Prevention Research Centers Managing Epilepsy Well (MEW) Network, a research practice community dedicated to advancing care approaches that can improve health outcomes in people with epilepsy.
      • DiIorio C.K.
      • Bamps Y.A.
      • Edwards A.L.
      • et al.
      The Prevention Research Centers׳ Managing Epilepsy Well Network.
      The MEW Network objective is to advance epilepsy self-management research that can be disseminated for public use, consistent with DHHS initiatives aimed at improving population health.

      U.S. DHHS. DHHS Healthy People 2020. www.healthypeople.gov. Accessed September 7, 2016.

      Comorbidity, Multi-morbidity, and Growing Burden

      CDC and others have reported higher rates of comorbidity in people with epilepsy, complicating self-management.
      CDC
      Comorbidity in adults with epilepsy—United States, 2010.
      People with epilepsy are at higher risk of suicide, possibly because of undertreated mental illness, suboptimal self-management, or the synergistic negative effects of psychiatric comorbidity.
      • Boylan L.S.
      • Flint L.A.
      • Labovitz D.L.
      • Jackson S.C.
      • Starner K.
      • Devinsky O.
      Depression but not seizure frequency predicts quality of life in treatment-resistant epilepsy.
      Cognitive impairment compounds epilepsy burden.
      • Mula M.
      • Cock H.R.
      More than seizures: improving the lives of people with refractory epilepsy.
      Though self-management is challenging for many, those with low income and of certain racial/ethnic groups face additional barriers related to cultural norms, limited English proficiency, low education and health literacy, and inadequate social support. Psychological distress is also more common in minorities. The MEW Network has prioritized the mental health needs of people with epilepsy since 2009.

      Meeting the Gap in Epilepsy Self-Management Research

      Until recently, medical management of epilepsy focused primarily on medication and less on other health behaviors important for seizure control (e.g., sleep, stress reduction). There is a clear need for self-management approaches that are comprehensive, evidence based, patient centered, and can be scaled widely in clinical and community settings.
      A strength of this mature network is its pipeline that ranges from efficacy studies developing and testing interventions to initiatives focused on improving access and dissemination among healthcare providers and hard-to-reach individuals (Figure 1). The MEW Network works with U.S. organizations to expand its capacity, help leverage funding and other resources, and enhance dissemination and sustainability of programs. The Network has a strong culture of collaboration across sites and with other researchers. Opportunities for interested investigators to collaborate with the Network include interaction at national scientific venues such as the American Epilepsy Society, where the Network is regularly represented, collaboration on Network workgroups, and direct contact with study teams, as described in the detailed information and contacts provided on the Network’s website.

      Managing Epilepsy Well (MEW) Network. http://managingepilepsywell.org.

      Figure 1
      Figure 1Managing Epilepsy Well (MEW) Network interventions and associated activities.
      CDC, Centers for Disease Control and Prevention; PRC, Prevention Research Centers.

      Brief Overview of Evidence-Based Approaches

      The MEW Network has led the way in developing approaches that improve the lives of people with epilepsy. Appendix Table 1 (available online) describes MEW Network studies with information on target population, delivery, content, and evidence base status. In all programs, community engagement provides guidance on cultural, literacy, and linguistic considerations, study recruitment and retention. Evidence-based programs include the following:
      • 1
        Epilepsy Awareness Support and Education (WebEase) is designed to improve adherence, reduce stress, and improve sleep in people with epilepsy. Participants are guided through program modules, using a tailored approach, and engage in activities relevant to their situations. Designed to eliminate barriers to care that people with epilepsy face, WebEase is available online (www.webease.org).
        • DiIorio C.
        • Bamps Y.
        • Walker E.R.
        • Escoffery C.
        Results of a research study evaluating WebEase, an online epilepsy self-management program.
      • 2
        Project UPLIFT (Using Practice and Learning to Increase Favorable Thoughts) is an 8-week program delivered by telephone or through the Internet to groups of people with epilepsy with comorbid depression or depressive symptoms. UPLIFT combines cognitive behavioral and mindfulness therapies to reduce depression in people with epilepsy. Intervention groups are facilitated by a mental health professional or supervised trainee and co-facilitated by a trained peer with epilepsy. The program has been shown to improve depressive symptoms, knowledge and skills, and satisfaction with life.
        • Thompson N.J.
        • Patel A.H.
        • Selwa L.M.
        • et al.
        Expanding the efficacy of Project UPLIFT: distance delivery of mindfulness-based depression prevention to people with epilepsy.
        • Thompson N.J.
        • Walker E.R.
        • Obolensky N.
        • et al.
        Distance delivery of mindfulness-based cognitive therapy for depression: Project UPLIFT.
      • 3
        The Program to Encourage Active Rewarding Lives (PEARLS) is for people with epilepsy with depression or dysthymia.

        Managing Epilepsy Well (MEW) Network. http://managingepilepsywell.org.

        This team-based intervention includes doctors, nurses, and social workers, and is delivered by a trained counselor in the client’s home.
        • Chaytor N.
        • Ciechanowski P.
        • Miller J.W.
        • et al.
        Long-term outcomes from the PEARLS randomized trial for the treatment of depression in patients with epilepsy.
      • 4
        Home Based Self-management and Cognitive Training Changes Lives (HOBSCOTCH) targets cognitive impairment in epilepsy. This intervention combines education about memory strategies and problem-solving therapy to improve memory and attention in people with epilepsy.
        • Caller T.A.
        • Ferguson R.J.
        • Roth R.M.
        • et al.
        A cognitive behavioral intervention (HOBSCOTCH) improves quality of life and attention in epilepsy.
      • 5
        The Program for Active Consumer Engagement in Epilepsy Self-Management (PACES) is designed to improve self-management and cognitive and emotional health in people with epilepsy. It is delivered in person in a community setting to groups of six to eight people with epilepsy or over the telephone by a psychologist and a trained peer with epilepsy. This intervention has been shown to improve self-management, self-efficacy, depression, and quality of life.
        • Fraser R.T.
        • Johnson E.K.
        • Lashley S.
        • et al.
        PACES in epilepsy: results of a self-management randomized controlled trial.

      New Interventions and Adaptation for Vulnerable Groups

      The MEW Network development pipeline includes new efforts (Appendix Table 1, Figure 1) that focus on minorities, underserved populations, youth, and people with epilepsy with comorbid serious mental illnesses (e.g., schizophrenia). The Network is adapting and testing WebEase in African Americans and Project UPLIFT in African Americans and in Hispanics; testing use of mobile technology to improve self-management and quality of life (PAUSE); testing a web-based group format approach targeting high-risk individuals with negative health events (SMART); and testing an online intervention incorporating elements of healthy youth development to promote self-management among adolescents with epilepsy (YESS). A tablet-based decision support system is being tested to assist clinicians in assessing patient self-management behaviors, goal-setting, and monitoring progress (MINDSET).
      • Begley C.
      • Shegog R.
      • Harding A.
      • Goldsmith C.
      • Hope O.
      • Newmark M.
      Longitudinal feasibility of MINDSET: a clinic decision aid for epilepsy self-management.
      In all studies, input from people with epilepsy or caregivers is solicited to produce programs that integrate patient cultural norms to maximize their appeal, usefulness, and impact. Associated research activities include continued validation of a new epilepsy self-management instrument and an integrated database initiative that will facilitate aggregate secondary data analysis.

      Dissemination Efforts

      Members of the MEW Network are committed to public dissemination of evidence-based self-management interventions. The MEW Network collaborates with the national Epilepsy Foundation, its local affiliates, and other community partners. For example, the Epilepsy Foundation adopted WebEase to make it freely available on its website. Similarly, with CDC's support, the Epilepsy Foundation provides grants to select affiliates to implement Project UPLIFT in some states. The Network uses social media for outreach. In 2015, members participated in an ABC News Twitter Chat generating 15.9 million estimated impressions. Since 2007, the Network has produced at least 43 articles, two study reports, seven book chapters, and 62 national and international presentations and posters.

      Action Recommendation

      Building the capacity of epilepsy self-management in communities requires the support of public health, clinical health care, social services, and other community partners.
      • Brady T.J.
      • Anderson L.A.
      • Kobau R.
      Chronic disease self-management support: public health perspectives.
      As opinion leaders, it is critical for physicians to recommend epilepsy self-management education or evidence-based programs to their patients. The MEW Network is exploring reimbursement strategies that can be used to sustain programs in clinic and community settings. Three major funding models for self-management services have been identified: charitable/government grants and contracts; Medicaid (MCO contracts, waivers, and state plan amendments); and private contracts (insurance companies, healthcare providers). It will be critical to have epilepsy stakeholders engaged in the process of identifying and crafting sustainable reimbursement models. It is likely that various strategies need to be explored to fit differing local circumstances and preferences. Although the potential gains are great, it will take effort, persistence, and patience to make evidence-based epilepsy self-management programs available to people with epilepsy on a broad population level.

      Acknowledgments

      This publication is a product of the Prevention Research Centers Program at the Centers for Disease Control and Prevention. The findings and conclusions in this publication are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
      We would like to dedicate this publication to Sandra Helmers, MD, MPH, Professor of Neurology at Emory University, who died on March 13, 2016. She worked tirelessly to improve the lives of patients with epilepsy. She was an energetic contributor to the Managing Epilepsy Well (MEW) Network, not only by substantially enhancing WebEase, one of the first self-management programs, but also by sharing her vision, collegiality, and dedication to improving care in epilepsy.
      The MEW Network is funded by the Centers for Disease Control and Prevention (CDC) and is supported by special interest project SIP 14-006 and SIP 14-007. Cooperative Agreement Numbers are: 1U48DP005002 (Arizona), 1U48DP005018 (Geisel School of Medicine at Dartmouth), 1U48DP005010 (Illinois), 1U48DP005042 (Morehouse), U48DP005008 (New York University), 1U48DP005022 (Minnesota), 1U48DP005030 (Case Western Reserve), 148DP005013 (Washington).
      MS has received research grants from Pfizer, Merck, Ortho-McNeil Janssen, Janssen, Reuter Foundation, Woodruff Foundation, Reinberger Foundation, NIH, and CDC. She has been a consultant to Bracket, Prophase, Otsuka, Pfizer, Sunovion, and Neurocrine. She has received royalties from Springer Press, Johns Hopkins University Press, Oxford Press, UpToDate, and Lexicomp. She has received compensation for Continuing Medical Education activities from the American Physician’s Institute, MCM Education, and CMEology. BCJ has received research support from Neuropace, Inc., NIH, the Defense Advanced Research Projects Agency, and CDC. RS has received research support from CDC and NIH. DKP has received research support from CDC, NIH, National Stroke Association, and Lundbeck. TMS has received research support from Pfizer, UCB, NIH, and CDC. No other financial disclosures were reported by the authors of this paper.

      Supplementary material

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