This randomized, controlled trial studied a promising self-management intervention for adults with epilepsy called FOCUS on Epilepsy. 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, and Study the results, savor positive changes, and select a reward
Developed and piloted in partnership with the Epilepsy Foundation of Michigan, the intervention combined skill building for self-regulation; training for social supporters; and materials for both people with epilepsy and their supporters with information about self-care. Adults with epilepsy each participated with someone who was key in his or her social support network. The intervention included a face-to-face workshop followed by telephone coaching sessions to reinforce skills learned. To evaluate the program’s effectiveness, CMCD investigators worked collaboratively with four Epilepsy Foundation affiliates in Michigan, Illinois, Ohio, and Wisconsin to recruit 159 dyads comprised of a person with epilepsy and a support person. Dyads were randomized into intervention and control groups and outcomes 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 trial suggested that FOCUS is a promising program. Despite the small numbers of participants in the pilot (n=19 participants with epilepsy), statistically significant positive changes were found in epilepsy-related quality of life and a measure of positive affect and well-being. Other outcomes, though not statistically significant, moved in the right direction: depression, healthy days, and epilepsy self-management behaviors. Qualitative data also provided insight into how the program had an impact on participants. For example, a participant with epilepsy said, “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.” Another said, “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.” Participating family and friends also provided insight; an adult son of a woman with epilepsy said, “…the fact that my mother asked me to come (was most rewarding). We made the connection that she wants some support in this. The program helped equip me to support her.”
Managing Epilepsy Well Network
Established in 2007, the Managing Epilepsy Well (MEW) Network works to develop and test self-management programs and tools for people with epilepsy and their care providers. A former member of the MEW Network, CMCD researchers worked alongside other universities, community-based organizations, and the Centers for Disease Control and Prevention (CDC) to promote epilepsy self-management and improve the quality of life for people with epilepsy. Data collected in both the FOCUS on Epilepsy pilot and RCT are included in an integrated MEW Network database that allows researchers to assess epilepsy self-management samples by site and in aggregate to support data interpretations for clinical care and ongoing research.
For more information, contact Dr. Mary Janevic at email@example.com.