1. FOCUSFOCUS There is a need for theory-based interventions that help adult individuals with epilepsy (IWE) manage epilepsy and its effects on quality life. Interventions promoting self-regulation have improved health and quality of life outcomes in other chronic diseases and hold promise for IWE. The FOCUS on Epilepsy intervention, piloted earlier this year in a community setting, integrates self-regulation skill-building with information and social support for IWE and their family members or friends. This poster explores the experiences of the participants with epilepsy and identifies areas where special attention is needed for future evaluation. The Intervention Conclusions Findings indicate that an intervention focusing on self regulation, provided in a community setting, and involving family or friends can be successfully implemented and well- received among adults with epilepsy. Results from short-term evaluations suggest that outcomes may include effects on self management behaviors, quality of life, positive affect and well-being, depression, and reported healthy days. Future study with larger samples and longer time frames are needed to explore these outcomes and others, including seizure frequency and health care use. The elements of self regulation most important in bringing about change in epilepsy outcomes also deserve further study. Introduction Results This study was part of a Special Interest Project of the Prevention Research Center of Michigan, funded by the Centers for Disease Control and Prevention (5-U48-DP-001901-02) and a member of the Managing Epilepsy Well Network. For more information, see: http://www.sph.emory.edu/ManagingEpilepsyWell/ Participants were recruited via email, web ads, and phone calls to Epilepsy Foundation of Michigan clients. Eligibility requirements: at least 21 years of age diagnosed with epilepsy for at least one year have at least one seizure in the last year mentally able to participate can recruit a close friend or family member willing to also take part in the program Participants were recruited via email, web ads, and phone calls to Epilepsy Foundation of Michigan clients. Eligibility requirements: at least 21 years of age diagnosed with epilepsy for at least one year have at least one seizure in the last year mentally able to participate can recruit a close friend or family member willing to also take part in the program The Participants FormatContent Week1 In-person, day-long workshop FOCUS steps Focus areas to consider Healthy behaviors Cognitive effects Social and emotional health First FOCUS steps: figure out problem or issue and create observation plan Week 2 One-on-one coaching call Review observation period Choose a change goal Develop strategy to achieve goal Week 3 One-on-one coaching call Review progress towards goal Troubleshoot barriers Modify goal if needed Select reward and new focus area if goal achieved Week 4 Conference call with other IWE Share FOCUS challenges and successes with peers Week 5 One-on-one coaching call Progress with next FOCUS step; customized to participants stage in the process Week 6 Conference call with other IWE Share FOCUS challenges and successes with peers The FOCUS steps embody the self regulation process used by participants to address an issue or concern of their choice. The 6-week pilot program consisted of a day-long workshop for IWE and their supporters, followed by regular telephone sessions with a coach. In these calls, IWE received guidance from their coach as they practiced the FOCUS self-regulation skills in addressing an issue in their lives that impacts their health and/or quality of life. Participating IWEs completed baseline and 4-month telephone interviews to assess outcomes and to explore the utility of existing and newly created scales and indices. Outcome scores for the scales were calculated by summing the values of multiple individual items, except for the quality of life measure, which is a mean score of the items answered. Paired t-tests were used to compare the mean scores from baseline to follow-up. Results were not adjusted for demographic or other factors. Extensive process data were collected from: Participants: end-of-workshop surveys and post-program phone interviews Coaches: telephone session logs and in-depth interviews Workshop facilitators: in-depth interviews Race/Ethnicity 65% White/Caucasian 29% Black/African American 6% Hispanic/Latino Education 29% High school grad or GED 24% Some college or associates 29% College degree 18% Advanced graduate degree Race/Ethnicity 65% White/Caucasian 29% Black/African American 6% Hispanic/Latino Education 29% High school grad or GED 24% Some college or associates 29% College degree 18% Advanced graduate degree The study was approved for human subjects research by the University of Michigan’s Health Institutional Review Board (HUM00040761). No statistically significant changes Seizure frequency Health care utilization (ED visits, hospitalization, scheduled and unscheduled visits to health care provider) The program was well-received: of 21 individuals with epilepsy who attended the workshop, 19 completed the program 17 completed the 4 month follow-up interview 14 of the 17 respondents said they would recommend the program to others The following quotes illustrate common themes among those with especially positive experiences: igure out the problem or issue bserve your routine hoose a change goal ndertake a change strategy tudy the results and select a reward Employment Status 47% Unable to work 24% Out of work > 1 year 18% Retired Household Income 30% less than $20K 35% $20K-$50K 35% over $50K 76% on disability insurance or social security disability Employment Status 47% Unable to work 24% Out of work > 1 year 18% Retired Household Income 30% less than $20K 35% $20K-$50K 35% over $50K 76% on disability insurance or social security disability Outcome Baseline score (SD) 4 month f/u score (SD) Sig (2- tailed) Positive affect and well-being 31.12 (5.7)34.06 (0.6.3)p=0.008 Quality of life (QOLIE-10-P)*3.47 (0.7)2.90 (0.8)p=0.001 Depression (PHQ-9)* Patient Health Questionnaire Depression Scale 9.29 (6.1)7.94 (5.4)p=0.121 Healthy days (of past 30) 15.65 (2.7)18.24 (2.5)p=0.302 Self management behaviors44.82 (7.6)45.53 (7.9)p=0.671 N=17 for the above analyses *lower score is desirable Promising Results: Important outcomes in the right direction Results “I plan to keep moving forward to empowering and taking my life into my hands regardless to how epilepsy has tried to conquer me. I am mine and this program just reassured me of that.” “The group support [was the most important part]. I am not the only one out there. I have felt so alone for so long. I don't anymore.” “Once I started taking care of myself more, I reduced the seizures, was able to do more things that I hadn't been able to. I took a trip by myself to visit some friends and worked this summer.” Special considerations in assessment Small sample size Short duration of follow-up Need to examine compelling aspects of self regulation in a larger sample, e.g., higher self efficacy appears correlated with less depression (r= -0.549, p=0.02) Assessment Methods Development and Piloting of a Program Designed to Develop Self Regulation Skills and Strengthen Social Support for Adults with Refractory Epilepsy Shelley Stoll MPH 1, Arlene Gorelick MPH 2, Russell Derry MPH 2, Linda M Selwa MD 1, Emily J Youatt MPH 1, Noreen M Clark PhD 1 1. University of Michigan 2. Epilepsy Foundation of Michigan Issues Chosen by Participants to Address