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MEW Network Workgroups

Active Workgroups:

Self-Management in Pediatric Epilepsy (June 2013-present)

Goal: The goal of this wokgroup is to identify the domains of epilepsy management in pediatric epilepsy and to consider transition issues from family-centered to independent epilepsy self-management (SM) from a developmental perspective. Three initial tasks are proposed: 1) Systematically review the current literature on pediatric epilepsy SM interventions; 2) Prepare a publication as an update the review of psychosocial interventions by Wagner & Smith (2006)*; and 3) In consultation with the adult self-management questionnaire recently developed by MEW, consider and write potential questions that represent the domains of SM in youth with epilepsy and their families.
* Wagner JL, Smith G. Psychosocial intervention in pediatric epilepsy: a critique of the literature. Epilepsy Behav 2006;8(1):39-49.

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Integrated, Ontology-driven Data Portal for the National Managing Epilepsy Well (MEW) Network (June 2013-present)

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

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Dissemination and Sustainability (November 2012-present)

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. 

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eTools and Technology (November 2012-present)

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.

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Self-Management Measurement Tool (February 2010-present)

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.

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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.

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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].
doi:10.1016/j.yebeh.2010.07.027.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.

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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)

 

 

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