UIC Department of Neurology and Rehabilitation
‘PAUSE’ to learn about your epilepsy using the latest technology
About one third of people with epilepsy have difficulty controlling their seizures, even with medications. Seizures can significantly interfere with one’s ability to work, sustain relationships, live independently, and think clearly. Many people with epilepsy report ongoing problems related to memory, stress, anxiety, loneliness, and depression – especially those among underserved and disadvantaged populations.
Despite all of the challenges that people with epilepsy face on a daily basis, there is hope. Frequency and severity of seizures can be reduced and quality of life can be improved with development of fairly straightforward self-management skills. Health care providers, people with epilepsy, and their caregivers can work together to help people with epilepsy learn about, build, and utilize epilepsy self-management skills.
Tuesday and Thursday afternoons in the UIC Neurology Clinic are busy with recruitment for the PAUSE (Personalized Internet Assisted Underserved Self-management of Epilepsy) to Learn Your Epilepsy study. As part of the enrollment process, new PAUSE study participants are asked to list three ways that epilepsy negatively impacts their daily lives, and three things they can do to improve these issues. While it often appears easy for new participants to list out the negative effects of epilepsy, most are unable to come up with even one thing they can do to address the problems they face related to their epilepsy. Instead, they fill in the blank lines with “Not sure”.
Teaching these critical epilepsy self-management skills is the goal of the PAUSE to Learn Your Epilepsy study. The UIC Department of Neurology and Rehabilitation has partnered with the Epilepsy Foundation in order to develop the PAUSE study, led by Dr. Dilip Pandey and Dr. Jeffrey Loeb. The PAUSE study is also a part of the Managing Epilepsy Well Network, which is coordinated by the Prevention Research Center funded by the CDC and committed to improving the lives of people with epilepsy. Dr. Pandey, principal investigator of the CDC-funded study and an expert in health outcomes research at the University of Illinois at Chicago states “the PAUSE study will provide important new data on how a flexible self-management program can help those affected with epilepsy.”
In the UIC Neurology clinic, PAUSE participants work with their health care provider upon enrollment to create a personalized list of self-management learning needs. “Each of our patients with epilepsy has unique needs for better self-management that this new technology allows us to address individually,” notes Dr. Loeb. These learning needs are programmed into a PAUSE computer tablet, which generates an educational program that is specific to each individual participant. The participant then takes the computer tablet home with them for a 10-12 week intervention period to complete their personalized self-management education program at their own pace.
The PAUSE self-management education program on the computer tablet provides participants with access to the Epilepsy Foundation Website (epilepsy.com) in order for them to work through lessons and utilize self-management tools and resources, such as seizure diaries. The computer tablet also allows participants to receive assistance and support from a research assistant during regularly scheduled video calls throughout the 10-12 week intervention period.
Participants have provided encouraging feedback during their video calls. Many have reported that they feel more knowledgeable about epilepsy and that they are learning how to use seizure diaries and trackers. Some participants have also shared that PAUSE has “allowed me to overcome the stigma associated with epilepsy and become more comfortable with acknowledging and talking about it.” Others have discussed developing healthier lifestyles by exercising more and eating healthier. There also have been several comments on improvements in mood, cognition, and memory.
Despite this positive verbal feedback, quantitative data collected from various questionnaires will need to be analyzed in order to understand the true effects and benefits of the PAUSE program regarding variables such as medication adherence, self-efficacy, seizure frequency, emergency room visits, and quality of life. The data collected thus far will be presented in three separate poster presentations at the American Epilepsy Society 2016 Annual Meeting, which will take place in Houston, Texas in December. The lead authors of the three accepted abstracts are Dr. Dilip Pandey, the PAUSE principal investigator, Marie Chesaniuk, who is pursuing her PhD in Clinical Psychology, and Nadia Nabulsi, an MPH student with a focus in epidemiology.
As the PAUSE study continues into 2017, participants will not only be recruited from the UIC Neurology Clinic, but also from the Chicago community with help from the Epilepsy Foundation of Greater Chicago. A higher number of participants will allow for a better understanding of the PAUSE program’s potential to empower people with epilepsy, strengthen their self-management skills, and improve their quality of life. Hopefully after completing the PAUSE study, participants will feel confident in their ability to identify three steps they can take to address the challenges they face related to epilepsy, instead of simply resigning to “Not sure”.