- Mary Janevic, MPH, PhD (Principal Investigator)
- Shelley C. Stoll, MPH (Project Manager)
- Arlene Gorelick, MPH (Chair, Expert Advisory Panel)
- Russell Derry, MPH (Community-based Research Associate)
- Jessica Varney (Research Assistant)
SIP 12-057 Managing Epilepsy Well (MEW) Collaborating Center
This randomized, controlled trial studies a promising self management intervention for adults with epilepsy, FOCUS on Epilepsy. Developed and piloted by the Center for Managing Chronic Disease in partnership with the Epilepsy Foundation of Michigan, the intervention combines skill building for self regulation by people with epilepsy; training for significant individuals providing social support to those with epilepsy; and provision of salient and focused materials and information to both. It is based on the principles of on self regulation and targeted social support.
FOCUS on Epilepsy stands for:
Figure out the problem or the issue
Observe your routine
Connect your observations and choose a change goal
Undertake a change strategy
Study the results, savor positive changes, and select a reward
Adults with epilepsy each participate with one family member or friend who is key in his or her social support network. The intervention comprises a face-to-face workshop for people with epilepsy and their chosen support person followed by a series of telephone coaching sessions to reinforce, practice and reflect upon skills learned. The program is based outside the clinical setting to underscore the central role of individual and family (versus medical care system) in control and decision making regarding epilepsy management. The combination of structured opportunities to improve self regulation skills, social support from a values individual, and telephone coaching have the potential to significantly affect epilepsy management.
Dr. Joseph Sirven, Professor of Neurology at Mayo Clinic Arizona and Editor-in-Chief of Epilepsy.com/Professionals, interviews Noreen M. Clark, PhD, Myron E. Wegman Distinguished University Professor, and Director, Center for Managing Chronic Disease, University of Michigan, and Mr. Russell Derry , Education Director of the Epilepsy Foundation of Michigan about FOCUS on Epilepsy: A Self-management Epilepsy Clinical Trial.
Listen to the Epilepsy.com Podcast
For the RCT, researchers worked with four Epilepsy Foundation affiliates in and near Michigan to recruit dyads composed of a person with epilepsy and a support person. After completing baseline interviews, 162 dyads were randomized into intervention and control groups. Seven month follow-up data are being collected via telephone interview. Key outcomes to be measured include epilepsy-related quality of life, positive affect and well-being, depression, healthy days, and epilepsy self-management behaviors.
A pilot study in preparation for the clinical trial suggested FOCUS is a promising program. Click here to read more about the FOCUS Pilot Study.
Related MEW publications:
DiIorio C, Bamps Y, Edwards AL, Escoffery C, Thompson NJ, Begley CE, Shegog R, Clark NM, Selwa L, Stoll S, Fraser RT, Ciechanowski P, Johnson EK, Kobau R, Price PH.(2010). The Prevention Research Centers' Managing Epilepsy Well Network. Epilepsy & Behavior. 2010 Sep 22. [Epub ahead of print].
View PubMed Abstract