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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

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Development and Piloting of a Program Designed to Develop Self Regulation Skills and Strengthen Social Support for Adults with Refractory Epilepsy

Shelley Stoll MPH1, Arlene Gorelick MPH2, Russell Derry MPH2, Linda M Selwa MD1, Emily J Youatt MPH1,

Noreen M Clark PhD1

1. University of Michigan 2. Epilepsy Foundation of Michigan

Introduction

The Intervention

Assessment Methods

Results

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.

  • F

  • O

  • C

  • U

  • S

  • igureout the problem or issue

  • bserveyour routine

  • hoose a change goal

  • ndertake a change strategy

  • tudythe results and select a reward

  • 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

Promising Results: Important outcomes in the right direction

Results

The Participants

N=17 for the above analyses

*lower score is desirable

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.

  • 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

  • No statistically significant changes

  • Seizure frequency

  • Health care utilization (ED visits, hospitalization, scheduled and unscheduled visits to health care provider)

Issues Chosen by Participants to Address

  • 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)

  • 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:

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.

“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.”

  • 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

  • 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

“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.”

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/

The study was approved for human subjects research by the University of Michigan’s Health Institutional Review Board (HUM00040761).


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