This report describes a prospective 2-site, 6-month randomized controlled trial of an epilepsy self-management curriculum (SMART). We hypothesized SMART would be associated with reduced negative health events (NHEs) and improved quality of life (QOL), functioning, and physical and mental health.

Self-management programs are used for many chronic health problems but are underutilized in epilepsy. 

Adults with epilepsy with at least one NHE (seizure, emergency department visit, hospitalization, or self-harm attempt) were enrolled. The primary outcome was reductions in NHE/day from baseline to 6 months follow up. Secondary outcomes included depressive symptoms assessed with the Patient Health Questionnaire (PHQ-9), functioning by the 36-Item Short Form Survey (SF-36), QOL by the 31-item Quality of Life in Epilepsy (QOLIE-31), self-management competence by the Epilepsy Self-Management Scale (ESMS), stigma by the Epilepsy Stigma Scale (ESS), social support by the Multidimensional Scale of Perceived Social Support (MSPSS) and self-efficacy by the Epilepsy Self-Efficacy Scale (ESES).

The sample consisted of 160 participants with a mean age of 39.4 (SD 12.2) years, 66.9% (N=107) women, 82.5% (N=132) white and 31% (N=50) from rural regions.  Mean depression severity was in the mild/moderate range with a mean PHQ-9 of 10.5 (SD 7). The mean duration of epilepsy was 15.5 (SD 13.8) years and the mean seizure count in the 6 months prior to baseline was 20.6 (SD 41.0). While total NHE counts were similar between arms, in logistic regression models, SMART had 2-fold increased odds of having 10-30% improvement in NHE numbers compared to waitlist (p<0.05). SMART was associated with significantly improved PHQ-9 (p=.014), QOLIE-31 seizure worry (p=<.001) and social functioning (p=.021), ESES (p=.046), and ESMS (p<.001).

Participating in SMART increased the likelihood of having a clinically relevant improvement in NHE and improved depressive symptoms, epilepsy self-management competency, self-efficacy, and elements of QOL.