Abstracts

Rationale: Epilepsy is a chronic neurological condition that causes substantial burden on patients and families. Quality of life may be reduced due to the stress of coping with epilepsy. For nearly a decade, the Centers for Disease Control (CDC) Prevention Research Center's Managing Epilepsy Well (MEW) Network has been conducting research on epilepsy self-management to address research and practice gaps. Studies have been conducted by independent centers across the U.S. Recently, the MEW Network began collaboratively compiling an integrated database to facilitate aggregate secondary analysis of completed and ongoing studies. In this preliminary analysis, correlates of quality of life in people with epilepsy (PWE) were analyzed from pooled baseline data from the MEW Network. Methods: For this analysis, the data used originated from 5 epilepsy self-management studies conducted across 4 research sites and comprised 438 PWE. Descriptive comparisons on common data elements that included gender, age, ethnicity, race, education, employment, income, frequency of seizures, quality of life, and depression were done. Standardized rating scales were used for quality of life (QOLIE-10) and for depression (Patient Health Questionnaire, PHQ-9). Results: While not all datasets included all common data elements, descriptive analysis found that MEW Network study participants had a mean age of 43 (SD 13.2), 292 women (66.7%), 49 African Americans (13.5%), 19 Hispanics (8.3%). 417 completed at least high school (95.9%), 100 (53.5%) were unmarried, divorced/separated, or widowed. Median seizure frequency in the last 30 days was 0.33 (range 0-308). Depression was common in this sample of PWE, with a mean score of 8.7 (SD 6.1) on the PHQ-9; 91 (31.6%) individuals had mild depression (PHQ-9 score 5-9) and 116 (40.3%) had moderate depression (PHQ-9 score > 9). Lower quality of life was associated with greater depressive severity (p < .001). Hispanic PWE tended to have lower QOLIE-10 scores compared to non-Hispanic PWE (p < .01). Conclusions: The MEW Network Integrated database offers a unique and novel opportunity for secondary analysis of study data from multiple community-based epilepsy self-management research studies. While findings must be tempered by potential sample bias, i.e. a relative under-representation of men and limited minority representation, results of analyses derived from this first integrated epilepsy self-management database have potential to be useful to the field. Associations between depression severity and lower QOL in PWE are consistent with previous studies derived from clinical samples. Self-management efforts that focus on mental health comorbidity and outreach to ethnic minorities, as currently conducted by the MEW network, may be one way to address modifiable factors that affect quality of life in epilepsy. Funding: This project was supported in part by CDC grants U48DP001930/5030, under the Health Promotion and Disease Prevention Research Centers Program, and in part by the National Institute of Biomedical Imaging and Bioengineering BD2K grant 1U01EB020955.