PACES in epilepsy: Results of a self-management randomized controlled trial.

Abstract

Self-management challenges facing adults with epilepsy include limited understanding of the condition and treatment, associated psychosocial issues, and lack of community integration. Self-management interventions improve patients' medical, life role, and emotional management. Previous interventions, developed from expert opinion, indicated issues with participant engagement/retention, and limited follow-up periods. PACES in Epilepsy addressed methodologic concerns by utilizing patient needs assessment data (n=165) to derive self-management content and program features for evaluation via randomized controlled trial (RCT). Participants were adults with chronic epilepsy (n=83), without serious mental illness or substantive intellectual impairment, who were recruited from two epilepsy centers. Participants were assigned randomly to intervention or treatment-as-usual groups. Outcomes included the Epilepsy Self-Management Scale (ESMS), Epilepsy Self-Efficacy Scale (ESES), Quality of Life in Epilepsy-31 (QOLIE-31), Patient Health Questionnaire-9 (PHQ-9), and the Generalized Anxiety Disorder-7 (GAD-7), administered at baseline, postintervention (8weeks), and 6months postintervention. The intervention was an 8-week group of 6-8 adults co-led by a psychologist and trained peer with epilepsy that met one evening per week at a hospital for 75min. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, in addition to community integration and optimizing epilepsy-related communication. The treatment group provided satisfaction ratings regarding program features. PACES participants (n=38) improved relative to controls (n=40) on the ESMS (p<0.001) and subscales [Information (p<0.001); Lifestyle (p<0.002)]; ESES (p<0.001); and QOLIE-31 (p=0.002). At 6-month follow up, PACES participants remained improved on the ESMS (p=0.004) and Information subscale (p=0.009); and Energy/Fatigue (p=0.032) and Medication Effects (p=0.005) of the QOLIE-31. Attrition in both groups was low (8% in each group) and all program satisfaction ratings exceeded 4.0/5.0, with leadership (4.76), topics (4.53), and location (4.30) as the most highly rated aspects. A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.