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

Abstract

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.

A systematic review and narrative synthesis of group self-management interventions for adults with epilepsy

“…Of the 11 studies included with this review (Table 1), nine were described by their authors as randomised controlled trials [15, 28–30, 31, 32–35] and the remaining two as controlled outcome designs [36, 37]. The first study included a matching strategy for allocating participants to control or treatment group [37].…”

“…vs controlAu et al [37]17 adults withepilepsy (age range not specified)≥ 2 seizures a month8 week psychological CBT int.Eight 2 hr structured sessionsGroup size: 8Discrete intervention2 clinical psychologists trained in seizure managementTAUQOLIE-31, ESES, seizure frequency3 months pre-int. and3 month follow-upSignificant improvement in QoL and self-efficacy scores in intervention group vs controlNo difference in seizure frequencyFraser et al [35]83 PWE randomisedAge ≥ 18Diagnosed for ≥6 months8 week psychoeducational int.Eight 75 min sessionsPresentations, facilitated discussion and workbookGroup size: 6–8. Discrete int.Rehabilitation psychologist and trained peer mentorWCQOLIE-31, ESMS, ESES,PHQ-9, GAD-7Pre-int., 8 week and 6 month follow-upQoL, self-efficacy and PHQ-9 scores improved at 8 weeks in int.…”

Targeted Self-Management of Epilepsy and Mental Illness for individuals with epilepsy and psychiatric comorbidity

“…Baseline average PHQ-9 score in the TIME study was 10.8 (SD 5.6), which is above the established PHQ-9 cut-off of 10 for moderate or severe depression. A MEW Network study by Fraser and colleagues,[46] which established the evidence-based PACES intervention, excluded individuals with active serious mental illness. In PACES, the baseline mean PHQ-9 was 8.4 (SD 6.1).…”

“…The study attrition rate of 20% is only slightly higher than the recently published MEW Network PACES trial which excluded people with epilepsy complicated by severe mental illness. [46]…”

Self-management in epilepsy: Why and how you should incorporate self-management in your practice

“…For example, HOBSCOTCH is a telephone-based program that can help improve memory and quality of life in adults with epilepsy [45]. PACES consists of weekly group meetings during which participants discuss topics (e.g., stress management, social participation, assertive communication) and set goals that are personally meaningful [47]. WebEase, a free on-line program, seeks to improve medication adherence, sleep quality, and stress management using proven behavioral science methods that account for people’s confidence in and readiness for behavior change [48].…”