Managing Epilepsy Well Network Logo Managing Epilepsy Well Home Page

Current Workgroups | Past Workgroups


MEW Network article (Completed: June 2010)

Goal: To produce an article on the MEW Network, including its history, its structure and mission, its research agenda, its research activities, its communication and translation strategies. Group completed its work in July 2010.


MEW publication:

DiIorio C, Bamps Y, Edwards AL, Escoffery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Fraser RT, Ciechanowski P, Johnson EK, Kobau R, Price PH.(2010). The Prevention Research Centers' Managing Epilepsy Well Network. Epilepsy & Behavior. 2010 Sep 22. [Epub ahead of print].
View PubMed Abstract


Epilepsy and stigma ( Completed: April 2011)

Goal: The goal of the workgroup is to complete a manuscript for a chapter on epilepsy and stigma to be included in a book devoted to epilepsy, co-morbidities and quality of life. This chapter will provide an overview on stigma, including its causes (e.g., history, culture), mediating factors (e.g., medical and psychosocial factors) and its manifestations (e.g., felt stigma).  The workgroup will focus on the issue of co-morbidities and the potential for “double stigma” in particular as it pertains to epilepsy and correlates such as depression, anxiety, cognitive impairments, learning disabilities or social circumstances. A section on combating stigma with population- and individual-level interventions will be included in the manuscript.


MEW publication:

Kobau R, DiIorio C, Thompson N, St. Louis E, Bamps Y. (2011)"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 (in press)


eTools and technology (November 2012-July 2013)

Goal: The goal of the workgroup is to look at the use and the impact of eTools and technology in the service of epilepsy self-management.


MEW publication:

Shegog R, Bamps Y, Escoffery C, Ilozumba O, Johnson EK, Kakacek J, Patel A..(2013). Managing Epilepsy Well: Emerging eTools for Epilepsy Self-management. Epilepsy & Behavior, Volume 29: 133–140.
doi: 10.1016/j.yebeh.2013.07.002
View PubMed Abstract


Integrated, ontology-driven data portal for the national Managing Epilepsy Well (MEW) Network (June 2013-August 2013)

Goal: This MEW Network workgroup will identify and implement the preliminary steps towards an integrated database across 6 centers within a CDC –funded epilepsy self-management network. This database initiative is intended to inform methods and data synthesis approaches that can advance the care of persons with epilepsy. Given the substantial impact of epilepsy on patients, families and on society, the public health impact of the work group’s efforts could be substantial. The CWRU site has obtained some modest internal funding from the CWRU CTSA to support initial infrastructure development and assist the work group in providing specific suggestions for early implementation to the MEW Network and to the epilepsy research community.  The long-term objective of the database is to create a common data capturing, storage, sharing, and query resource for MEW participating centers. It is expected that the shared database will facilitate externally supported projects and activities that will be able to continue the maintenance and sustainment of the database infrastructure.

Workgroup objectives: Convene a workgroup to 1) provide a written narrative of the current status of domains of epilepsy self-management outcome measurement(s) within the MEW Network and in the literature base; 2) recommend a specific battery of outcomes assessments in epilepsy self-management; 3) recommend specific next steps needed to implement and integrate the epilepsy self-management outcomes battery across the MEW network and recommend at least one specific project that can re-purpose/re-use existing data within the Network



Dissemination and sustainability (November 2012-June 2014)

Goal: The goal of the workgroup is to coordinate and enhance the dissemination, implementation and sustainability efforts of research findings and products undertaken by MEW members. 




MEW integrated database initiative (October 2013-September 2014)

Goal:The second component of the integrated database implementation is to pilot a secondary use of existing data across 4 representative sites in the Network that will use Tier 1 data elements to address at least one of the hypothetical scenarios identified by workgroup consensus. Each of the participating sites in the pilot study would contribute data from 1-2 pre-existing completed or current studies being conducted at the site, work with corresponding site institutions and IRBs to develop appropriate data use agreements, and conduct the necessary preliminary work to refine the scenario questions and conduct relevant analyses. It is expected that this exercise will identify the capacities and limitations of the sites/infrastructure in order to inform subsequent research studies, grant proposals, and additional secondary data analyses. An example of an issue that would be addressed in this pilot exercise is how longitudinal data with repeated measures should best be managed. Frequency and duration of data collection across studies varies widely, yet still needs to be able to answer questions regarding epilepsy self-management across populations and sub-groups. Initially, data would be housed at the database initiative lead site, but it is expected that on a longer-term basis, data would reside at each site and use a cloud-based system for integration and use. The CWRU Prevention Research Center (PRC) has agreed to support a second phase of support for selected elements of the secondary use pilot.



Self-management measurement tool (February 2010-January 2016)

Goal: The need for a common measure of epilepsy self-management arose from recognition that most Network projects include self-management as an important variable.  The MEW network agreed that a common measure would facilitate comparison of findings from the studies and would be a contribution to the epilepsy research community.  The workgroup agenda includes defining epilepsy self-management, identifying its components, selecting/writing items, and obtaining expert review of the initial measure.  Testing of the measurement tool will include cognitive assessments and a series of studies to assess reliability and validity.  The workgroup plans to complete the project over a one-year period and disseminate its findings to the epilepsy community.

Members (February 2010-January 2016):

Associated members, survey field-testing (June 2013-December 2013):

  • Valerie Coffman, LVN (Kelsey Seybold Clnic)
  • Kari Colon-Zimmermann (Case Western Reserve University)
  • Pamela Conford, MS, CSW (Epilepsy Foundation of Metropolitan New York)
  • Anita Curran (Rhode Island Hospital)
  • Evan Donohue, BSN (Emory University)
  • Sandra Helmers, MD, MPH (Emory University)
  • Michael E. Newmark, MD (Kelsey Seybord Clinic)
  • Leslie Rudzinski, MD (Emory University)
  • Martha Sajatovic, MD (Case Western Reserve University) Co-Chair
  • Linda Selwa, MD (University of Michigan)
  • Naymee J. Velez-Ruiz, MD (Emory University)
  • Elizabeth Welter, MS, MA (Case Western Reserve University)


Escoffery C, Bamps YA, LaFrance W, Stoll SC, Shegog R, Buelow J, Shafer PO, Thompson NJ, McGee R, Hatfield K. (2015).Development of the Adult Epilepsy Self-Management Measurement Instrument (AESMMI). Epilepsy & Behavior, 50:172-83.
doi: 10.1016/j.yebeh.2015.07.025

Escoffery C, Bamps YA, LaFrance W, Stoll SC, Shegog R, Buelow J, Shafer PO, Thompson NJ, McGee R, Hatfield K. (2015).Factor Analyses of an Adult Epilepsy Self-Management Measurement Instrument (AESMMI). Epilepsy & Behavior, 50: 184-9.
doi: 10.1016/j.yebeh.2015.07.026
View  PubMed Abstract

Escoffery C, McGee RE, Bamps Y and Helmers SL. (2016).Differences in Epilepsy Self-ManagementBehaviors among Young and Older Adults. Austin J Neurol Disord Epilepsy, 3(1): 1015.



MEW Network