1. Epilepsia. 2015 Aug;56(8):1264-74. doi: 10.1111/epi.13052. Epub 2015 Jun 29.

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

Fraser RT(1)(2)(3), Johnson EK(2), Lashley S(3), Barber J(4), Chaytor N(1),
Miller JW(5), Ciechanowski P(6), Temkin N(4)(7), Caylor L(8).

Author information: 
(1)Rehabilitation Medicine, University of Washington, Seattle, Washington, U.S.A.
(2)Health Promotion Research Center, University of Washington, Seattle,
Washington, U.S.A.
(3)Neurology Vocational Services Unit, University of Washington, Seattle,
Washington, U.S.A.
(4)Neurological Surgery, University of Washington, Seattle, Washington, U.S.A.
(5)Neurology, University of Washington, Seattle, Washington, U.S.A.
(6)Psychiatry and Behavioral Sciences, University of Washington, Seattle,
Washington, U.S.A.
(7)Biostatistics, University of Washington, Seattle, Washington, U.S.A.
(8)Swedish Neuroscience Institute, Seattle, Washington, U.S.A.

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.
SIGNIFICANCE: A consumer generated epilepsy self-management program appears to be
a promising intervention from multiple perspectives, particularly in relation to 
disability management.

Wiley Periodicals, Inc. © 2015 International League Against Epilepsy.

DOI: 10.1111/epi.13052 
PMID: 26122460  [Indexed for MEDLINE]