Few people know much about the seizure disorder called epilepsy even though it is more prevalent than cerebral palsy, multiple sclerosis, Parkinson’s, and autism spectrum disorders combined. Epilepsy affects children and adults, and at least 40% of people with epilepsy continue to have seizures despite treatment. Even those who can control seizures with treatment may suffer from the disorder’s impact such as stigma, depression, medication side effects, and social isolation.
The Center for Managing Chronic Disease, in collaboration with the Prevention Research Center of Michigan and the Epilepsy Foundation of Michigan, is working to help adults with epilepsy better manage epilepsy and its effects. FOCUS on Epilepsy is a new self-management program for adults with the condition and family members, that trains participants in problem-solving skills they use to tackle issues that affect seizure control or quality of life.
The program begins with a day-long workshop followed by a series of one-on-one phone calls with a coach who supports the participant as he or she works through the problem-solving process. Family members address how they can enhance their support, and participants with epilepsy choose from topics such as stress management, sleep habits, social connectedness, and medication management.
FOCUS on Epilepsy was developed and piloted in 2011 with support from the CDC. The pilot showed promise in improving quality of life, positive affect and well-being, and number of physically and emotionally healthy days. The CDC recently announced new funding to more thoroughly test the program’s effectiveness in a randomized, controlled trial that will take place over the next two years.
For additional information on this program and other CDC-funded epilepsy self-management research, visit the Managing Epilepsy Well Network website.