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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.

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.

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.

SIGNIFICANCE:

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

KEYWORDS:

Consumer-generated intervention; Depression; Epilepsy; Quality of life; Self-efficacy; Self-management

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