Program of Active Consumer Engagement in Self‐Management in Epilepsy: Replication and extension of a self‐management randomized controlled trial

Abstract Objective The Program of Active Consumer Engagement in Self‐Management in Epilepsy (PACES) is an evidenced‐based self‐management intervention for adults with epilepsy. Prior randomized controlled trial (RCT) data show that PACES reduces depression and improves self‐management, self‐efficacy, and quality of life for 6 months postprogram. The objective of this study was to replicate a PACES RCT with key extensions: more diverse patient pool from community‐based epilepsy centers; option for telephone‐based participation; and longer follow‐up (12 months with booster support for intervention group), to examine duration of impact and inform dissemination and implementation. Methods Participants were adults with chronic epilepsy (n = 101) without serious mental illness or substantive intellectual impairment, recruited from three epilepsy centers. Participants were randomly assigned to intervention or waitlist control groups. Outcomes included the Epilepsy Self‐Management Scale (ESMS), Epilepsy Self‐Efficacy Scale (ESES), Quality of Life in Epilepsy‐31, Patient Health Questionnaire‐9, and Generalized Anxiety Disorder‐7, administered at baseline, postintervention (8 weeks), and 6 and 12 months postintervention. Intervention was an 8‐week group of five to eight adults co‐led by a psychologist and trained peer with epilepsy that met once per week by teleconference or in person at a hospital for 60‐75 minutes. Topics included medical, psychosocial, cognitive, and self‐management aspects of epilepsy, as well as community integration and epilepsy‐related communication. Treatment group provided program evaluation. Results PACES participants (n = 49) improved relative to controls (n = 52) on the ESES ( P < .022) and overall distress composite ( P = .008). At 6 months, PACES participants remained improved on the ESES ( P = .008) and composite ( P = .001), and were improved on the ESMS ( P = .005). At 12 months, PACES participants remained improved on the ESMS ( P = .006) and were improved on an overall distress composite of combined measures ( P = .018). Attrition was low (<6% in each group), and all program satisfaction ratings exceeded 4.0/5.0. Significance A consumer‐generated epilepsy self‐management program with broad psychosocial and medical emphasis can be effectively delivered by telephone or in person and facilitates long‐term epilepsy self‐management, adjustment, and coping up to 1 year after treatment.