Abstracts

Rationale: The 2012 IOM Report, ‘Epilepsy Across the Spectrum,’ emphasized our need to provide evidence-based, scalable, epilepsy self-management (S-M) programs to people with epilepsy (PWE). The Managing Epilepsy Well (MEW) Network, funded through the Prevention Research Centers by the Centers for Disease Control and Prevention (CDC), has a mission to advance epilepsy S-M research by developing effective interventions for broad dissemination. The purpose of this study is to describe the MEW national strategic plan for dissemination of evidence-based MEW S-M programs and results to date. Methods: An adapted Intervention Mapping framework and expert consensus building informed steps to: 1) Develop an expert stakeholder working group; 2) define priority populations (including PWE, health care providers, stakeholder organizations, and policy makers); 3) define critical priority domains; 4) review and adapt successful models and case studies; and 5) define objectives; timeline, and deliverables. Results: The MEW dissemination workgroup comprises stakeholder institutions (n=13): MEW academic network sites (n=10), MEW network partners (Epilepsy Foundation and American Epilepsy Society), and the MEW sponsor (CDC). MEW product output comprises 1) programs (n=14) targeting S-M and co-morbidities for diverse PWE, settings, and channels; 2) an epilepsy S-M survey for research and clinical application; 3) an integrated common data base depository with over 1,700 PWE participant records, and 4) a MEW website for dissemination of information on epilepsy S-M and MEW research and outreach activities. To date MEW programs have reached PWE in 34 U.S. states. This has included research programs involving a total of 1,071 PWE participants in intervention research (excluding survey research) and 928 PWE receiving MEW S-M programs in non-research contexts. MEW research findings have been disseminated in over 50 peer-reviewed publications, reports, and commentaries, and over 40 scientific abstracts. An emergent MEW dissemination task timeline prioritizes the long-term roll-out of dissemination deliverables that include products for 1) adoption: S-M program toolkits (n=10) to promote program awareness and online decision support algorithms and matrices to assist providers choose the appropriate S-M programs for their patients; 2) implementation: program user guides (n=10) to ensure program fidelity and completeness; and 3) maintenance: guidelines and case studies on compensation policies and practices, and accreditation to promote sustainability of MEW S-M programs and services. Conclusions: Successful dissemination of epilepsy self-management programs requires the development of a strategic plan that accounts for an evidence base, multiple user levels and settings, and a supportive payer infrastructure. Existing development frameworks, dissemination models, and case studies can inform the development of a systematic strategic plan to navigate the complexity and barriers inherent in the nation-wide dissemination of epilepsy S-M programs. Funding: This work has been funded through CDC-funded Special Interest Projects provided through the Prevention Research Centers.