Addressing implementation challenges in the delivery of an epilepsy self-management program in community settings

Abstract

Aims: This report describes implementation of the SMART epilepsy self-management (ESM) program in a community setting. Methods: SMART was implemented by 3 epilepsy-focused social services agencies. Pre/Post outcomes included past 30-day seizure frequency, the 9-item Patient Health Questionnaire (PHQ-9), the 10-item Quality of Life in Epilepsy (QOLIE-10) and the 7-item Generalized Anxiety Disorder (GAD-7) scale. Results: There have been 8 nurses (mean age 63.6, SD 9.1) and 14 peer educators trained (mean age 44.3, SD 15.8, having epilepsy a mean of 18.2, SD 11.1 years). Mean number of SMART sessions attended (out of a maximum of 8) was 5.7, SD 2.2. Sample means on PHQ-9 (pre 8.0 (SD 5.4) vs. post 7.3 (SD 5.0), p = 0.026) and on QOLIE-10 (pre = 2.9 (SD 0.9) vs. post 2.6 (SD 0.9), p < 0.007) significantly improved while change in GAD-7 and in past 30-day seizure frequency were not significant. Substantial proportions had social determinant of health distress with 30.3 % (n = 27) having housing insecurity, 44.9 % (n = 40) having food insecurity, 43.8 % (n = 39) transportation problems, 74.2 % (n = 66) with financial strain, 41.6 % (n = 37) with problems in activities of daily living and 23.6 % (n = 21) experiencing physical violence. Individuals who attended no sessions were more likely to be non-White (P = 0.017), have less than high school education (P = 0.061) and are less likely to have mental health diagnoses (P = 0.006) Conclusions: Epilepsy-focused social services agencies can successfully implement ESM. Agency experience could help other social services agencies in adopting ESMs to support clients with epilepsy.