The program of active consumer engagement in self-management (PACES) in epilepsy
- Robert T. Fraser, PhD. Principal Investigator
- Erica K. Johnson, Ph.D., CRC (Co-Investigator/Project Coordinator)
- Steven Lashley, B.A., Research Assistant/Peer Facilitator
- Paul Ciechanowski, MD, MPH (Co-Investigator)
- Naomi Chaytor, PhD, ABPP-CN (Co-Investigator)
- John Miller, MD, PhD (Co-Investigator)
- Lisa Caylor, M.D. (Swedish Neuroscience Institute, Epilepsy Center)
- Nancy Temkin, PhD (Co-Investigator)
SIP 12-09: Managing Epilepsy Well: A Consumer Generated Self-Management Model
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, 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 methodological concerns by utilizing patient needs assessment data (n=165) to derive self-management content and program features for evaluation in a randomized controlled trial (RCT).
Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Robert Fraser, PhD, about the PACES Trial for Epilepsy- Helping Rural Communities deal with Epilepsy
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Participants were adults with chronic epilepsy (n=83), without serious mental illness or substantive intellectual impairment, recruited from two epilepsy centers. Participants were randomly assigned to intervention or treatment–as-usual groups. Outcomes included the Epilepsy Self-Management Scale, Epilepsy Self-Efficacy Scale, Quality of Life in Epilepsy (QOLIE)-31, Patient Health Questionnaire (PHQ)-9, and the Generalized Anxiety Disorder (GAD)-7, administered at baseline, post-intervention (8 weeks), and 6 months post-intervention. The intervention was an 8-week group of 6-8 adults co-lead by a psychologist and trained peer with epilepsy that met one evening per week at a hospital for 75 minutes. Topics included medical, psychosocial, cognitive, and self-management aspects of epilepsy, as well as community integration and optimizing epilepsy-related communication. The treatment group provided satisfaction ratings regarding program features.
PACES participants (n=41) improved relative to controls (n=42) on the ESSM (p<0.0001) and subscales [Information (p<0.0001); Lifestyle (p<0.0001); Medication (p=0.023); and Safety (p=0.025)]; ESES (p<0.0001); and QOLIE-31 (p=0.002). At 6-month follow up, PACES participants remained improved on the ESSM (p=0.009) and subscales [Information (p=0.005); Medication (p=0.084)]; ESES (p=0.040) and Energy/Fatigue (p=0.027) and Medication Effects (p=0.003) 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.
A consumer generated epilepsy self-management program appears to be a promising intervention from multiple perspectives, particularly in relation to disability management.
I do not need all the information immediately, but we would like to be able to list your and the names of your teammates on the directory and on the membership roll as soon as possible.
Fraser R, Johnson EK, Lashley S, Barber J, Chaytor N, Miller JW, Ciechanowski P, Temkin N, Caylor L.(2015).PACES in epilepsy: Results of a self-management randomized controlled trial. Epilepsia. 2015 Jun 29. [Epub ahead of print]
View PubMed Abstract
Fraser, R.T., Johnson, E.K., Lashley, S., Barber, J., Chaytor, N.A., Miller, J.W., et al., (December, 2014). PACES in Epilepsy: Results of a self-management randomized controlled trial. Poster accepted for the 67th Annual Meeting of the American Epilepsy Society, Seattle, WA.
Bruyere, S.M., Fraser, R.T., Johnson, E.K., & Krause, J.S. (August, 2014). The role of psychology in improving employment outcomes for people with disabilities. Symposium presented at the 122nd Annual Meeting of the American Psychological Association, Washington, DC.
Johnson, E.K., Fraser, R.T., Miller, J.W., Temkin, N., Barber, J., Ciechanowski, P., et al. (2013). The Program of Active Consumer Engagement in Self-Management (PACES) for Epilepsy. Poster accepted for the 121st Annual Convention of the American Psychological Association, Honolulu, HI.