Overcoming Epilepsy Self-Management Barriers

Epilepsy self-management has several online platforms, but one titled PatientsLikeMe became the focal point for a study led by John D. Hixton MD, University of California - San Francisco. Findings were presented at the American Academy of Neurology 68th Annual Meeting in Vancouver on April 17.

Online self-management tools are under-utilized. Digital health care tools can be the solution to barriers patients face that are associated with in-person care. These include distance, time constraints, and expense.

On the other hand, some patients might shy away from computer technology altogether. This inevitability was not addressed by the study, however.

Traditional, in-person self-management and education programs have proven effective for people with epilepsy. But they are only as effective as the people who participate in that self-management program. There will always be people who are not able to stick with any program.

A gap exists between the number of people who use such programs and those who don’t. That gap could be filled if people with barriers to in-person programs climb on board the digital self-management train.

If epilepsy patients participate with consistency and accuracy in an online self-management program, the metrics will better inform their physicians of details such as the patients’ frequency of seizures. This could positively impact their treatment and improve their quality of life.

The POEM (Patients Optimizing Epilepsy Management) study, presented in a poster session at the annual meeting, sought to find out how effective an online patient-driven community can be.

Two hundred forty-nine Veteran epilepsy patients answered questionnaires of epilepsy self-management (ESMS) and self-efficacy (ESES) before entering the online community. Ninety-two completed the 6-week period of the study.

The community consisted of an online forum and self-tracking tools to report seizures, side effects, and medical compliance. Video education was also included. These tools were all available at any time to participants with internet connectivity on their tablet, computer, or mobile device. 

The study demonstrated:

A. the feasibility of implementing an online health platform among patients with epilepsy

B. a positive impact on self-management metrics

There was a statistically significant improvement in both ESMS (total 139.7 to 142.7, P=0.02) and ESES (total 244.2 to 254.4, P=0.02) scores. Score for a subscale of ESMS, information management, showed the largest impact (20.3 to 22.4, P<0.001).

It sounds simple enough to those of us who use digital technology every day at work. However, Hixton stated in the poster presentation that the reasons for barriers to digital self-care tools are three-fold: lack of a smartphone/computer, lack of high-speed internet access, and lack of computer literacy.

“Digital on-demand platforms,” affirms Hixton, “offer benefits that will improve care access and program sustainability.”

The number of Americans living with epilepsy today is staggering - 3 million, according to the Epilepsy Foundation. One-third of them are living with uncontrolled seizures. If those 1 million or so people learn to self-manage online and access the educational content on the same platform, their incidence of seizures may well decrease. This could mean a significantly better quality of life.

Reference: Hixson J, et al. Use of a Digital Self-Management Platform for Improving Access in Epilepsy Patients. P2.002, Apr 17, 2016. AAN Annual Meeting, Vancouver, British Columbia.