Prevention Research Centers
`
` ]
`
`The Managing Epilepsy Well Network
`and Selected Self-Management Programs
`Putting Collective Wisdom to Work
`for People with Epilepsy
`
`National Center for Chronic Disease Prevention and Health Promotion
`Division of Population Health
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`This booklet describes the structure and mission of the Centers for Disease
`Control and Prevention’s (CDC’s) Managing Epilepsy Well (MEW) Network and
`presents selected network accomplishments. The MEW Network is a thematic
`network of CDC’s Prevention Research Centers (PRC) Program and is funded by
`CDC’s Epilepsy Program.
`
`L L
`
`Suggested Citation
`Centers for Disease Control and Prevention. The Managing Epilepsy Well Network and Selected
`Self-Management Programs: Putting Collective Wisdom to Work for People with Epilepsy. Atlanta, GA:
`Centers for Disease Control and Prevention, US Dept of Health and Human Services; 2016.
`
`Website addresses of nonfederal organizations are provided solely as a service to our readers.
`Provision of an address does not constitute an endorsement by CDC or the federal government,
`and none should be inferred. CDC is not responsible for the content of other organizations’
`web pages.
`
`US Department of Health and Human Services
`Centers for Disease Control and Prevention
`National Center for Chronic Disease Prevention and Public Health Promotion
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`Contents
`
`About the Managing Epilepsy Well Network . . . . . . . . . . . . . . . . . . . . . .2
`
`Epilepsy and Epilepsy Self-Management . . . . . . . . . . . . . . . . . . . . . . . . . .3
`
`Emphasis on Mental Health . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4
`
`The MEW Network’s Community of Practice . . . . . . . . . . . . . . . . . . . . . . .5
`
`The MEW Network Centers and Members . . . . . . . . . . . . . . . . . . . . . . . .6
`
`MEW Network Workgroups . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8
`
`Self-Management in Pediatric Epilepsy . . . . . . . . . . . . . . . . . . . . . . .8
`
`Self-Management Measurement Tool . . . . . . . . . . . . . . . . . . . . . . . . .8
`
`Dissemination and Sustainibility . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .8
`
`Integrated Database . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9
`
`e-Tools and Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9
`
`Epilepsy and Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9
`
`Epilepsy Self-Management Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
`
`Research Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
`
`Evidence-Based Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
`
`Promising Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
`
`New Programs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
`
`Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
`
`Selected Research Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
`
`References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
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`• ••
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`•
`•
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`About the Managing Epilepsy Well Network
`Since 2007, CDC’s Managing Epilepsy Well (MEW) Network has provided national
`leadership in developing, testing, and distributing innovative self-management
`programs, tools, and trainings for epilepsy professionals. These efforts help people
`with epilepsy better manage their disorder and enhance their quality of life.
`National and local organizations, federal agencies, health care organizations, and
`people who have epilepsy all participate in the network, which includes a wide
`range of clinical, public health, social service, and personal expertise.
`
`This expertise has led the network to develop effective programs that people
`who have epilepsy can use in their homes, at their doctor’s offices, or in other
`community settings. Some of these epilepsy self-management programs are
`available by phone, online, and on other electronic devices, eliminating barriers
`to care, such as lack of access to transportation, functional limitations, and stigma.
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`• •
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`Epilepsy and Epilepsy Self-Management
`Epilepsy self-management encompasses
`three broad areas:
` ➤ Treatment management, such as
`medication schedules, keeping clinic
`appointments, and communicating
`with health care professionals.
`
`Epilepsy is one of the most common
`neurological disorders, affecting about
`2.9 million people in the United States
`in 2013.1 Epilepsy is a general term for
`conditions with recurring seizures.
`
`Because seizures range in severity, type,
`and effect and can occur alongside other
`conditions, epilepsy is also referred to as
`a spectrum disorder. All seizures involve
`abnormal electrical activity in the brain
`that causes an involuntary change in body
`movement or function, sensation, awareness,
`or behavior. Usually, a seizure lasts from a
`few seconds to a few minutes. Epilepsy has
`many causes, including brain injury, central
`nervous system infection, stroke, and family
`tendency. But in most cases, the cause is
`unknown.
`
`Although there are medications to help
`prevent seizures, they are not always
`completely successful—about one-third
`of people with epilepsy who are receiving
`care still experience seizures.2 Uncontrolled
`seizures can increase risk of injury, anxiety,
`depression, brain damage, and in rare
`cases, death. Uncontrolled seizures can
`also interfere with normal day-to-day
`activities, such as working, going to school,
`and socializing with friends and family. For
`some people with epilepsy, treatment can
`be complex, and treatment side effects
`(e.g., memory problems) can add to the
`challenges of living with epilepsy.
`
`As with any chronic condition, many people
`with epilepsy can benefit f om learning
`skills and techniques that help them better
`manage their disorder and its effects on
`daily life. Adopting and reinforcing self-
`management behaviors requires an active
`partnership between a person with epilepsy
`and the person’s health care provider.
`
` ➤ Seizure management, such as
`recognizing and avoiding seizure
`triggers whenever possible and
`keeping track of seizures.
`
` ➤ Lifestyle management, such as getting
`adequate sleep, reducing stress, and
`maintaining social support networks.
`
`The MEW Network addresses the gap in
`evidence-based programs for epilepsy
`self-management by developing effective
`programs and tools to help people with
`epilepsy manage their condition.
`
`Did you know?
`
` ➤ Health care professionals have described
`more than 40 different types of seizures.
`
` ➤ Many cases of epilepsy can be prevented by
`taking measures to prevent head injury and
`other trauma.
`
` ➤ Proper prenatal care can also prevent some
`cases of epilepsy.
`
` ➤ First aid for seizures involves responding
`in ways that can keep the person safe until
`the seizure stops by itself. Learn about first
`aid for seizures at www.cdc.gov/epilepsy/
`basics/first-aid.htm.
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`Emphasis on
`Mental Health
`
`Although epilepsy and mental illness are
`separate conditions, people who have
`epilepsy often have depression, anxiety, worry,
`negative feelings about life, and difficultie
`with memory and concentration. For some
`
`people, the conditions affecting the brain that
`cause epilepsy can also cause mental illness.
`People with epilepsy sometimes encounter
`negative and stigmatizing attitudes from the
`public that harm their self-esteem and limit
`their life opportunities.
`
`In addition, loss of independence, including
`loss of driving privileges for some or lack of
`access to public transportation for others,
`further affects quality of life. People with
`epilepsy might have problems negotiating
`workplace accommodations, challenging
`their ability to work full-time.
`
`For these reasons, the MEW Network has
`made the mental health needs of people
`with epilepsy a priority.
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`programs with professionals and the public.
` ➤Sharing information about MEW Network
`
`opportunities.
` ➤Supporting professional training
`
`capabilities.
` ➤Improving analytic and reporting
`
`national initiatives.
` ➤Supporting and promoting key
`
`epilepsy self-management.
`standards of research in the field of
` ➤Measuring progress and promoting
`public health by doing the following:
`outcomes, the network also affects the field of
`progress and success. In addition to these
`network expansion, to gauge the network’s
`outcomes, such as products, collaboration, and
`Members also identify and track meaningful
`
`its research agenda and priorities.
`defining the struture of the network and setting
`network’s collaborating centers are partners in
`knowledge and expertise. In addition, the
`together, members deepen the community’s
`effective management of epilepsy. Working
`in which all participants work to improve the
`The MEW Network forms a community of practice
`
`Community of Practice
`The MEW Network’s
`
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`The MEW Network Centers and Members
`
`The MEW Network is made up of a
`coordinating Prevention Research Center
`(PRC), collaborating PRCs, associate
`members, at-large members, and
`participating partners. Together, these
`members expand capacity, expertise, and
`resources to support self-management
`efforts and to increase use of MEW Network
`programs and tools.
`
`The coordinating center’s primary goal is
`to provide leadership and coordination
`of efforts across the MEW Network. The
`coordinating center is also engaged
`in program development. Dartmouth
`College in Lebanon, New Hampshire, is the
`coordinating PRC.
`
`The collaborating PRCs are currently funded
`and responsible for a variety of tasks,
`including development and implementation
`
`of actions within the network. The following
`are collaborating PRCs:
` ➤ Case Western Reserve University PRC
`(Cleveland, Ohio)
`
` ➤ University of Washington PRC
`(Seattle, Washington)
`
` ➤ University of Arizona PRC
`(Tucson, Arizona)
`
` ➤ Morehouse School of Medicine PRC
`(Atlanta, Georgia)
`
` ➤ New York University PRC
`(New York City, New York)
`
` ➤ University of Illinois at Chicago PRC
`(Chicago, Illinois)
`
` ➤ University of Minnesota PRC
`(Minneapolis, Minnesota)
`
`Managing Epilepsy Well (MEW) Network
`Prevention Research Centers
`
`University of
`Washington
`
`University of
`Minnesota
`
`Dartmouth
`College
`
`University
`of Illinois
`at Chicago
`
`Case Western
`Reserve
`University
`
`3
`
`New York University,
`School of Medicine and
`City University of New York,
`School of Public Health
`
`University
`of Arizona
`
`Morehouse
`School of
`Medicine
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`61.11111111:1111211111110011111
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`
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`IMEIMI111111111111111MI IMEIMI111111111111111MI
`
`Participating partners are institutions,
`organizations, or agencies that have a vested
`interest in MEW Network activities, but
`are not affil
`ted with a PRC. The following
`organization is a participating partner:
`American Epilepsy Society.
`
`Associate members are previously funded
`network sites that remain active in network-
`specific esearch or in distributing network
`programs or tools.
` ➤ Emory University (Atlanta, Georgia)
`
` ➤ University of Texas Health Sciences
`Center (Houston, Texas)
`
`At-large members are organizations or
`groups that are nominated to represent
`partners or agencies not funded under the
`Network Special Interest Project cooperative
`agreement. The following foundation is an at-
`large member: National Epilepsy Foundation.
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`MEW Network Workgroups
`
`The MEW Network forms a community of practice,
`which provides a forum for colleagues in and
`outside of the network to participate in and lead
`network workgroups. MEW Network workgroups
`accelerate a project by advancing a particular
`epilepsy self-management topic. Workgroups
`include the following:
`
`Self-Management in Pediatric Epilepsy
`The Self-Management in Pediatric Epilepsy
`Workgroup has identified the main opics
`of epilepsy management in pediatric epilepsy
`and the challenges of transitioning from family-
`centered to independent epilepsy management.
`Members have conducted a comprehensive
`literature review, are currently summarizing current
`programs that are available for pediatric epilepsy,
`and are developing research questions that
`examine self-management among young people
`with epilepsy and their families.
`
`Self-Management Measurement Tool
`The MEW Network identified the need or a
`standard way to measure improvements in self-
`management outcomes. The Self-Management
`Measurement Tool Workgroup defined epilepsy
`self-management, identified the omponents
`of epilepsy self-management, developed a
`measurement tool, and validated the tool.
`
`Dissemination and Sustainibility
`The Dissemination and Sustainability Workgroup
`leads efforts to share information about network
`products with the public with an aim to increase
`their use. Accomplishments include coordinating
`a series of public webinars on epilepsy self-
`management and developing a social networking
`strategy, which includes recording podcasts and
`using Twitter to share information about MEW
`Network programs (@MEWNetwork).
`
`i D 8
`
`Members of the Self-Management
`Measurement Tool Workgroup
`conducted a series of studies to
`assess the reliability and validity of
`the Epilepsy Self-Management Tool.
`This tool is available on the MEW
`Network website at
`http://managingepilepsywell.org/
`research/instruments.html.
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`Integrated Database
`The Integrated Database Workgroup is developing an integrated database among the eight
`network PRCs to create a common resource to capture, store, share, and query data. The database
`will help members use resources effici
`tly and enhance collaborative efforts among centers. The
`integrated database will also store information about non-network programs that show other
`successful ways to help care for people with epilepsy.
`
`e-Tools and Technology
`The e-Tools and Technology Workgroup examined the use and effectiveness of electronic tools
`(e-Tools) and technology for delivering epilepsy self-management. The use of technology
`increases access to self-management programs among people with limited mobility or people in
`rural areas. Accomplishments include the preparation and publication of an article describing the
`use of e-Tools for chronic disease and epilepsy self-management.
`
`Epilepsy and Stigma
`The Epilepsy and Stigma Workgroup finali ed a chapter about epilepsy and stigma that is
`included in the book The Interictal State in Epilepsy: Co-morbidities and Quality of Life. The chapter,
`titled Implications for Understanding and Combating Stigma, provides an overview of the stigma
`of epilepsy, including its causes, mediating factors, and manifestations. See the Selected Research
`Findings section of this booklet for a full reference.
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`Epilepsy Self-Management Programs
`Research Findings
`The MEW Network members share research findings o
`produce effective programs and resources. For example,
`researchers from the Dartmouth College PRC participated
`in the University of Washington PRC’s PEARLS training and
`adapted its problem-solving section to be included in the
`HOBSCOTCH program. The network shares its findings
`in scientific and p ofessional literature, on its website,
`and at professional conferences and events. During
`2007-2015, the MEW Network produced more than 50
`scientific jou nal articles, 4 book chapters, and 65 scientific
`presentations and posters. The MEW Network also shares
`its work through the MEW website.
`
`“One thing I’m taking away
`from the program is the
`knowledge that I’m in control
`of myself, and that I’m able
`to make myself feel good
`when I get into a stressful or
`upsetting situation, especially
`when it is a result of my
`epilepsy.”
`—UPLIFT Participant
`
`Evidence-Based Programs
`r
`
`UPLIFT (Using Practice and Learning to Increase Favorable
`Thoughts) is an 8-week program delivered through the Internet or by
`phone to groups of adults who have both epilepsy and depression.
`Participants learn how to identify and modify their thoughts and
`how to become aware of and nonreactive to negative thoughts. An
`effectiveness study3 found that participants’ symptoms of depression
`decreased, and their knowledge and skills increased after completing
`the program. With funding from the National Institutes of Health,
`Project UPLIFT was adapted into a depression prevention intervention.
`The modified p ogram proved to be effective4 in preventing major
`depressive disorder among people with epilepsy who have mild depression symptoms through
`an evaluation at multiple sites across the MEW Network.
`
`MEW Network researchers are adapting and testing Project UPLIFT among African Americans in
`Georgia and among Spanish-speaking adults with epilepsy in New York. A version for caregivers is
`also in development. In addition to helping people in the epilepsy community, Project UPLIFT is
`also being tested as a way to help pregnant women in rural areas and people with cystic fib osis.
`
`Learn more at http://managingepilepsywell.org/programs/uplift.html.
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`PEARLS-
`PEARLS-
`
`PEARLS (Program to Encourage Active, Rewarding Lives) is an effective
`home-based depression treatment program for adults with epilepsy
`and depression.5 The program is delivered by a trained counselor in the
`participant’s home and consists of eight sessions. Through these one-on-
`one visits, the participant learns how to address issues that contribute
`to depression, such as being socially alone and not being independent.
`Research by the University of Washington has shown that adults with
`epilepsy who participated in the PEARLS program were less depressed
`and had fewer suicidal thoughts for 12 to 18 months compared with
`program participants who received usual care.6
`
`The PEARLS training is available online and offers professional certific tion credits.
`
`Learn more at www.pearlsprogram.org/.
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`HOBSCOTCH (Home-Based Self-Management and Cognitive
`Training Changes Lives) is a program led by Dartmouth College that
`is designed to address memory and attention problems among people
`with epilepsy through a combination of in-person visits and phone calls
`that provide coaching. About half of people who experience seizures
`report more difficulties with mem y than people without seizures.7 An
`evaluation of this program found that it improved participants’ quality of
`life and some aspects of memory function, specifically ttention.8
`
`Learn more at http://managingepilepsywell.org/programs/hobscotch.html.
`
`
`
`Weigitase Weigitase
`
`
`
`EPROM, AWNAMBS, SUMit end EllUCOtIOA EPROM, AWNAMBS, SUOODit end EllUCOtIOA
`
`WebEase (Epilepsy Awareness, Support, and Education) is a web-based
`self-management program for adults with epilepsy. By using WebEase, users
`can learn, adjust, or reinforce self-management skills related to medication
`taking, stress, and sleep management. Results from a 2011 study showed
`that participation in and completion of the WebEase program significa tly
`improved self-effic
`y and medication adherence and showed trends
`for improvement in other self-management behaviors.9 Researchers are
`working to translate WebEase into Spanish.
`
`Learn more at www.webease.org/.
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`PACES for Epilepsy (Program for Active Consumer Engagement
`in Self-Management) is an epilepsy self-management program that
`is tailored for individuals’ specific self-manageme t needs, such as
`stress, mood and memory, and information processing concerns. The
`8-week program for urban-dwelling adults includes in-person sessions
`with a trained professional and a peer who has epilepsy. A 2015 study
`found that after 6 months, adults with epilepsy showed improvements
`.1
`\
`in their understanding of their condition and their ability to manage
`medication side effects, such as fatigue.10 Researchers are adapting PACES for use with rural-
`dwelling adults.
`
`iii
`
`PACES PACES
`
`
`
`in Epilepsy in Epilepsy
`
`Learn more at http://managingepilepsywell.org/programs/paces.html.
`
`C
`
`TIME (Targeted Self-Management for Epilepsy and Mental
`Illness) is a program for adults who have both epilepsy and a
`serious mental illness, such as severe depression, bipolar disorder,
`or schizophrenia.
`
`The TIME program, adapted from an effective self-management
`program for people with diabetes and a serious mental illness,11
`consists of 12 weekly group sessions that include education,
`behavioral modeling, and group support. Groups are co-led by a
`nurse educator and a peer educator, which is a key feature of the TIME program. During these
`sessions, the group addresses the challenges that a person is likely to experience when they
`have both epilepsy and a serious mental illness. Educational topics include personalized goal-
`setting, medication adherence, and dealing with the double stigma of having both epilepsy
`and a serious mental illness. A 2016 study found that after 4 months, TIME was effective in
`reducing depressive symptoms in participants compared with control subjects.12
`
`Learn more at http://managingepilepsywell.org/research/past/TIME.html.
`
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`Promising Programs
`
`(,,MINDSE
`ior
`1 oho.
`
`Management Informateni
`INxisian Supped Epilepsy T
`
`MINDSET (Management Information and Decision Support
`Epilepsy Tool) is a clinic-based computer program designed to enhance
`epilepsy self-management communication between patients and their
`health care professionals.13 On the basis of the patient’s symptoms, behavior,
`thoughts, and attitudes, the program will give the patient and the health care
`professional information about the patient’s self-management needs. It also
`gives recommendations on important discussion points for the clinic visit,
`patient management goals, and suggestions for a patient self-management
`action plan after the clinic visit. Further studies of effectiveness and a Spanish version are underway
`in Arizona and Texas.
`
`• •
`
`Learn more at http://managingepilepsywell.org/research/arizona_mindset.html.
`
`New Programs
`The MEW Network has new programs that include a focus on minorities, underserved
`populations, and youth:
`
` ➤ The network is testing use of video conferencing through tablets to improve self-
`management skills and quality of life. It is also testing a web-based group format
`approach designed to reach people at high risk of negative health events, such as
`seizures, hospitalizations, accidents or traumatic injuries, or self-harm attempts.
`
` ➤ An online intervention incorporating elements of healthy youth development among
`teens with epilepsy is also being developed.
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`Conclusion
`
`Since its inception in 2007, the MEW Network
`has advanced epilepsy self-management
`research and program implementation.
`However, the combined and persistent efforts
`of multiple partners will be needed to make
`evidence-based epilepsy self-management
`programs widely available to people with
`epilepsy. Ultimately, disseminating epilepsy self-
`management programs among communities
`will require the support of public health,
`health care, social services, payers, and other
`community partners.
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`Selected Research Findings
`
`MEW Network members distribute research findings so th t effective programs and resources
`are available to people with epilepsy. Information is shared in a variety of formats for a variety
`of audiences. For example, the network shares its findings in the scie tific pee -reviewed and
`professional literature, on its website, and at professional conferences and events.
`
`The following are publication highlights from the network. For more, visit CDC’s Epilepsy website
`at www.cdc.gov/epilepsy/publications/articles/chronological.htm.
`
` ➤ Begley CE, Shegog R, Iyagba B, et al. Socioeconomic status and self-management in
`epilepsy: comparison of diverse clinical populations in Houston, Texas. Epilepsy Behav.
`2010;19(3):232-238.
`
` ➤ Begley C, Shegog R, Harding A, Goldsmith C, Hope O, Newmark M. Longitudinal feasibility of
`MINDSET: a clinic decision aid for epilepsy self-management. Epilepsy Behav. 2015;44C:143-
`150. doi:10.1016/j.yebeh.2014.12.031.
`
` ➤ Caller TA, Ferguson RJ, Roth RM, et al. A cognitive behavioral intervention (HOBSCOTCH)
`improves quality of life and attention in epilepsy. Epilepsy Behav. 2016;57(Pt A):111-117.
`doi:10.1016/j.yebeh.2016.01.024.
`
` ➤ 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(3):545-549.
`
` ➤ Clark NM, Stoll S, Sweetman M, Youatt EJ, Derry R, Gorelick A. Fostering epilepsy self-
`management: the perspectives of professionals. Epilepsy Behav. 2010;19(3):255-263.
`
` ➤ DiIorio C, Bamps Y, Walker ER, Escoffery C. Results of a research study evaluating WebEase,
`an online epilepsy self-management program. Epilepsy Behav. 2011;22(3):469-474.
`
` ➤ DiIorio C, Bamps Y, Edwards AL, et al. The Prevention Research Centers’ Managing Epilepsy
`Well Network. Epilepsy Behav. 2010;19(3):218-224.
`
` ➤ Escoffery C, Bamps YA, LaFrance W, et al. Factor analyses of an Adult Epilepsy Self-
`Management Measurement Instrument (AESMMI). Epilepsy Behav. 2015;50:184-189.
`
` ➤ Escoffery C, McGee RE, Bamps Y, Helmers SL. Differences in epilepsy self-management
`behaviors among young and older adults. Austin J Neurol Disord Epilepsy. 2016;3(1):1015.
`
` ➤ Fraser RT, Johnson EK, Miller JW, et al. Managing epilepsy well: self-management needs
`assessment. Epilepsy Behav. 2011;20(2):291-298.
`
` ➤ Fraser RT, Miller JW, Johnson EK. Epilepsy. In: Flanagan S, Zaretsky HH, Moroz A, eds. Medical
`Aspects of Disability, Fourth Edition: A Handbook for the Rehabilitation Professional.
`New York, NY: Springer; 2010:177-194.
`
` ➤ Fraser RT, Johnson EK, Lashley S, et al. PACES in epilepsy: results of a self-management
`randomized controlled trial. Epilepsia. 2015;56:1264-1274.
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` ➤ Johnson EK, Fraser RT, Miller JW, et al. A comparison of epilepsy self-management needs:
`provider and patient perspectives. Epilepsy Behav. 2012;25(2):150-155. doi:10.1016/
`j.yebeh.2012.07.020.
`
` ➤ Kobau R, DiIorio C, Thompson N, St. Louis E, Bamps Y. Epilepsy, comorbidities, and
`consequences: implications for understanding and combating stigma. In: St Louis E, Ficker
`D, O’Brien T, eds. Epilepsy and the Interictal State: Co-morbidities and Quality of Life.
`Wiley-Blackwell; 2015:15-28. doi:10.1002/9781118951026.
`
` ➤ Kobau R, Price P, Hawkins NA. News from the CDC: translating epilepsy self-management
`research to practice. Transl Behav Med. 2012;2(2):124-125.
`
` ➤ Sahoo S, Zhang GQ, Bamps Y, et al. Managing information well: towards an ontology-driven
`informatics platform for data sharing and secondary use in epilepsy self-management
`research centers. Health Informatics J. 2016;22(3):548-561. doi:10.1177/1460458215572924.
`
` ➤ Sajatovic M, et al. The Managing Epilepsy Well (MEW) network: advancing self-management
`research and dissemination to reduce the burden of epilepsy. Am J Prev Med. In press.
`
`y of Project UPLIFT for prevention: distance
` ➤ Thompson NJ, Patel A, Selwa LM, et al. The effic
`delivery of mindfulness-based depression prevention. J Consult Clin Psych. 2015;83(2):
`304-313.
`
` ➤ Walker ER, Bamps Y, Burdett A, DiIorio C, Rothkopf J. Social support for self-management
`behaviors among people with epilepsy: a content analysis of the WebEase program.
`Epilepsy Behav. 2012;23(3):285-290.
`
`In May 2012, MEW Network members conducted the first in a se ies of webinars dedicated to the
`topic of epilepsy self-management. The intent of the series was to provide an overview on how
`self-management differs from patient education programs and to highlight MEW resources.
`
`These webinars are intended for a wide range of community epilepsy stakeholders and are
`publicly available on the MEW website at http://managingepilepsywell.org. Also available on the
`website are podcast interviews with researchers from each of the network centers highlighting
`various programs and studies.
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`References
`
`1. Centers for Disease Control and Prevention. Epilepsy Fast Facts website.
`http://www.cdc.gov/epilepsy/basics/fast-facts.htm. Accessed September 13, 2016.
`
`2. Devinsky O. Patients with refractory seizures. NEJM. 1999;340(20):1565-1570.
`
`3. Thompson NJ, Reisinger Walker E, Obolensky N, et al. Distance delivery of mindfulness-
`based cognitive therapy for depression: Project UPLIFT. Epilepsy Behav. 2010;19(3):247-254.
`doi:10.1016/j.yebeh.2010.07.031.
`
`y of Project UPLIFT: distance
`4. Thompson NJ, Patel A, Begley C, et al. Expanding the effic
`delivery of mindfulness-based depression prevention to people with epilepsy. J Consult
`Clinic Psychol. 2015;83(2):304-313. doi:10.1037/a0038404.
`
`5. Ciechanowski P, Chaytor N, Miller J, et al. PEARLS depression treatment for individuals with
`epilepsy: a randomized controlled trial. Epilepsy Behav. 2010;19(3):225-231. doi:10.1016/
`j.yebeh.2010.06.003.
`
`6. 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(3):545-549. doi:10.1016/j.yebeh.2011.01.017.
`
`7. Kleen JK, Scott RC, Holmes GL, et al. Cognitive and Behavioral Co-Morbidities of Epilepsy.
`4th ed. Bethesda, MD: National Center for Biotechnology Information; 2012.
`
`8. Caller TA, Ferguson RJ, Roth RM, et al. A cognitive behavioral intervention (HOBSCOTCH)
`improves quality of life and attention in epilepsy. Epilepsy Behav. 2016;57(Pt A):111-117.
`doi:0.1016/j.yebeh.2016.01.024.
`
`9. DiIorio C, Bamps Y, Escoffery C, Reisinger-Walker E. Results of a randomized controlled
`trial: evaluating WebEase, an online epilepsy self-management program. Epilepsy Behav.
`2011;22(3):469-474. doi:10.1016/j.yebeh.2011.07.030.
`
`10. Fraser RT, Johnson EK, Lashley S, et al. PACES in epilepsy: Results of a self-management
`randomized controlled trial. Epilepsia. 2015;56(8):1264-1274. doi:10.1111/epi.13052.
`
`11. Blixen C, A Perzynski, Kan