Abstracts

Rationale: The CDC Managing Epilepsy Well (MEW) Network is a thematic research consortium that conducts prevention research on epilepsy self-management to address gaps related to public health practice. To enhance outcomes, the MEW Network has initiated an informatics-enabled data collection and management system that supports data sharing as well as interoperability within the Network. Methods: The Network convened a workgroup to develop an epilepsy self-management integrated informatics platform. The workgroup completed a number of initial steps, including: 1) A survey of existing epilepsy self-management MEW Network outcome data; 2) A literature review, analysis of survey findings, and identification of a standardized set of common data elements; 3) Development strategy of an informatics platform and 4.) A proof-of-concept analysis that pooled data from existing self-management studies to evaluate the association between quality of life and demographic/clinical characteristics in people with epilepsy (PWE). Results: The MEW Network has used disparate measurement metrics to describe common data categories. For example, depression in people with epilepsy (PWE) was assessed using a variety of standardized tools such as the Beck Depression Inventory (BDI), the PHQ-9, and the Montgomery Asberg Depression Rating Scale (MADRS). An integrated informatics platform can address the issue of data heterogeneity using common data elements with an incremental three-tier implementation strategy. Common core data Tier 1 elements included demographic and clinical characteristics of PWE as well as brief and easy to administer self-rated mood and quality of life (QOL) measures. Data harmonization/cross-walk procedures enabled data category assessments across studies. In preliminary proof-of-concept analysis, data was pooled from 2 epilepsy self-management studies and included 158 PWE. QOL means did not differ among PWE for categories of individuals who were minorities vs. non-minority, married vs. non-married and older vs. younger. QOL unexpectedly was positively correlated with increasing seizure frequency. Conclusions: The next steps in MEW Network integrated database development include database expansion with inclusion of more trials data, and longitudinal analysis of outcomes. An integrated informatics platform based on a standardized MEW-specific terminology and database management systems may advance knowledge on epilepsy self-management strategies, may demonstrate program impact with greater reliability, and has potential application in other thematic research centers. Collaboration across MEW Network sites can address challenges that impede successful planning and implementation of the platform.