SUMMARYObjective: 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 treatmentas-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 < 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. Significance: A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.
ObjectiveThe 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.MethodsParticipants 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.ResultsPACES 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.SignificanceA 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.
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