Robert T Fraser1,2,3, Erica K Johnson2, Steven Lashley3, Jason Barber4, Naomi Chaytor1, John W Miller5, Paul Ciechanowski6, Nancy Temkin4,7, Lisa Caylor8. 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 inEpilepsy-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.
RCT Entities:
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.
Authors: Robin E McGee; Martha Sajatovic; Rakale C Quarells; Erika K Johnson; Hongyan Liu; Tanya M Spruill; Robert T Fraser; Mary Janevic; Cam Escoffery; Nancy J Thompson Journal: Epilepsy Behav Date: 2019-04-08 Impact factor: 2.937
Authors: Martha Sajatovic; Curtis Tatsuoka; Elisabeth Welter; Adam T Perzynski; Kari Colon-Zimmermann; Jamie R Van Doren; Ashley Bukach; Mary Ellen Lawless; Eleanor R Ryan; Katherine Sturniolo; Samden Lhatoo Journal: Epilepsy Behav Date: 2016-10-12 Impact factor: 2.937
Authors: Martha Sajatovic; Erica K Johnson; Robert T Fraser; Kristin A Cassidy; Hongyan Liu; Dilip K Pandey; Rakale C Quarells; Peter Scal; Samantha Schmidt; Ross Shegog; Tanya M Spruill; Mary R Janevic; Curtis Tatsuoka; Barbara C Jobst Journal: Epilepsia Date: 2019-09-05 Impact factor: 5.864
Authors: Martha Sajatovic; Curtis Tatsuoka; Elisabeth Welter; Daniel Friedman; Tanya M Spruill; Shelley Stoll; Satya S Sahoo; Ashley Bukach; Yvan A Bamps; Joshua Valdez; Barbara C Jobst Journal: Epilepsy Behav Date: 2017-01-27 Impact factor: 2.937
Authors: Rosa Michaelis; Venus Tang; Janelle L Wagner; Avani C Modi; William Curt LaFrance; Laura H Goldstein; Tobias Lundgren; Markus Reuber Journal: Cochrane Database Syst Rev Date: 2017-10-27
Authors: Sandra L Helmers; Rosemarie Kobau; Martha Sajatovic; Barbara C Jobst; Michael Privitera; Orrin Devinsky; David Labiner; Cam Escoffery; Charles E Begley; Ross Shegog; Dilip Pandey; Robert T Fraser; Erica K Johnson; Nancy J Thompson; Keith J Horvath Journal: Epilepsy Behav Date: 2017-02-12 Impact factor: 2.937
Authors: Martha Sajatovic; Barbara C Jobst; Ross Shegog; Yvan A Bamps; Charles E Begley; Robert T Fraser; Erica K Johnson; Dilip K Pandey; Rakale C Quarells; Peter Scal; Tanya M Spruill; Nancy J Thompson; Rosemarie Kobau Journal: Am J Prev Med Date: 2017-03 Impact factor: 5.043