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

Summary Objective 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). Methods 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 (8 weeks), and 6 months 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 75 min. 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. Results PACES participants (n = 38) improved relative to controls (n = 40) on the ESMS (p