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(Abst. 3.343), 2017

Correlates of Self-management Behavior in MEW Network Participants
Authors: Charles Begley, The University of Texas; Ross Shegog, The University of Texas; Hongyan Liu, Case Western Reserve University, School of Medicine; Curtis Tatsuoka, Case Western Reserve University; Robert T. Fraser, University of Washington School of Medicine; Erica Johnson, University of Washington; Yvan Bamps, Emory University; Tanya Spruill, New York University School of Medicine; Daniel Friedman, NYU Langone Medical Center, New York, NY, USA; and Martha Sajatovic, Case Western Reserve University, School of Medicine
Content: Rationale: There is limited information on the level and variation in self-management (S-M) behavior among people with epilepsy (PWE) and associated demographic and clinical correlates. National (n=300) and clinic-based (n=172) surveys suggest that seizure and medication management behaviors are more frequently practiced by PWEs and that management of social support, safety, lifestyle, and information are practiced less frequently. Reported correlates of S-M behavior include age (PWE < 30 years report less safety, wellness, and treatment behavior) and psychosocial factors of self-efficacy, mood, and social support. The purpose of this study is to determine the variability in total and domain-specific S-M behavior and demographic and clinical correlates across MEW sites. Methods: The Managing Epilepsy Well (MEW) research network data base represents epilepsy S-M data from PWEs broadly distributed in the U.S. providing a relatively large sample, common measurement, and common data elements. Data was merged from 437 PWEs participating in five research studies conducted at MEW sites throughout the U.S: PACES, MORE, SMART, MINDSET, and WebEase. Common data elements were cleaned and harmonized. Data included demographics (gender, age, ethnicity, race, education, employment, income, household composition, relationship status / marital status); clinical variables (age of onset of seizures, types of seizures, health status, healthy days, depression - PHQ9, and quality of life –Qolie10); and S-M (the 38-item (PACES, MORE, SMART), 36-item (MINDSET), and 22-item (WebEase) versions of the S-M Epilepsy Questionnaire). Descriptive analyses of total and domain specific scale scores described variation in sample means across sites and patient characteristics. ANOVA was used to determine the significance of the range of scores. Spearman correlations of group comparisons of self-management distributions conducted across categorical variables using nonparametric methods were calculated to identify significant factors associated with behavior. Results: Respondent PWE (n=433) were 41.1 (±12.5) years and mostly female (64.9%), non-Hispanic/Latino (76.4%), white (66%) or Black (23.9%), with education to grade 12 (21.4%) or at least some college (68.9%). Most were either never married (44.5%) or married (34.3%). Mean past 30 day seizure count was 4.7 (±15.8). Mean PHQ and Qolie10 scores were 10.9 (±7.3) and 28.2 (±8.4) respectively. Across sites the average S-M scores were highest for medication (4.21±0.7), seizure (4.15±0.64), and safety (3.91±0.68) management. Scores for lifestyle (3.11±0.67) and information (2.44±0.83) were lowest. Total scores and information and seizure scores were consistent across sites but medication, safety, and lifestyle scores varied significantly (p < 0.01). Significant correlates with better S-M included lower depression and non-Hispanic ethnicity and significant correlates with better medication and lifestyle management was lower depression and higher quality of life (all p < 0.01). Conclusions: Findings from this national sample were consistent with existing theory and prior empirical studies. Funding: This project was supported in part under the Health Promotion and Disease Prevention Research Centers Program, funded by the CDC. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.