title: PACES in epilepsy: Results of a self-management randomized controlled trial.
abstract: 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 < 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.
  
  
  CONCLUSIONS
  A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.
authors.affiliation: Rehabilitation Medicine, University of Washington, Seattle, Washington, U.S.A.|Health Promotion Research Center, University of Washington, Seattle, Washington, U.S.A.|Neurology Vocational Services Unit, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Robert T
authors.initials: RT
authors.lastname: Fraser
authors.affiliation: Health Promotion Research Center, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Erica K
authors.initials: EK
authors.lastname: Johnson
authors.affiliation: Neurology Vocational Services Unit, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Steven
authors.initials: S
authors.lastname: Lashley
authors.affiliation: Neurological Surgery, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Jason
authors.initials: J
authors.lastname: Barber
authors.affiliation: Rehabilitation Medicine, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Naomi
authors.initials: N
authors.lastname: Chaytor
authors.affiliation: Neurology, University of Washington, Seattle, Washington, U.S.A.
authors.forename: John W
authors.initials: JW
authors.lastname: Miller
authors.affiliation: Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Paul
authors.initials: P
authors.lastname: Ciechanowski
authors.affiliation: Neurological Surgery, University of Washington, Seattle, Washington, U.S.A.|Biostatistics, University of Washington, Seattle, Washington, U.S.A.
authors.forename: Nancy
authors.initials: N
authors.lastname: Temkin
authors.affiliation: Swedish Neuroscience Institute, Seattle, Washington, U.S.A.
authors.forename: Lisa
authors.initials: L
authors.lastname: Caylor
mesh_terms: D000328:Adult; D001007:Anxiety / Q000523:psychology*; D003863:Depression / Q000523:psychology*; D004827:Epilepsy / Q000523:psychology / Q000534:rehabilitation*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D010353:Patient Education as Topic; D017060:Patient Satisfaction; D011788:Quality of Life / Q000523:psychology*; D012648:Self Care; D020377:Self Efficacy; D016896:Treatment Outcome
keywords: Consumer-generated intervention; Depression; Epilepsy; Quality of life; Self-efficacy; Self-management