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Online patient networks could improve epilepsy management

Posted by
Amy Chandler, Public Relations & Communications, UCB, Inc.
Could an online patient network help veterans living with epilepsy better manage their condition? According to results of the Policy for Optimal Epilepsy Management (POEM) study, it could.

Last year, UCB teamed up with the U.S. Department of Veterans Affairs’ Epilepsy Centers of Excellence (ECoE) to conduct a real-world study of how an online patient network, PatientsLikeMe®, could influence disease management in veterans living with epilepsy.

The first results from the POEM study were presented at the 66th Annual Meeting of the American Academy of Neurology in Philadelphia.

The study asked veterans living with epilepsy to complete a baseline assessment of two validated scales that measure epilepsy self-management practices, the Epilepsy Self-Management Scale (ESMS) and the Epilepsy Self-Efficacy Scale (ESES).

After completing the initial survey, 249 patients were invited to register as PatientsLikeMe members and engage on the site, which offers multiple ways for patients to connect with other patients, condition-specific tracking tools and educational resources.

Six weeks later, 92 participants (36.9%) completed the assessment of ESES and ESMS measures again. These veterans reported improvement in epilepsy self-management and self-efficacy, demonstrated by increases in both the ESMS and ESES total scores over six weeks. The greatest change was observed on the ESMS information management subscale.

The POEM research built on a 2010 survey by UCB and PatientsLikeMe which showed that people living with epilepsy who joined the PatientsLikeMe community reported that they better understood their own seizures and improved adherence to their medication.

We know that patients turn to health data sharing networks to learn about their conditions and exchange experiences with people in similar situations. The results of the POEM study reinforce the potential for a digital health solution like PatientsLikeMe to positively influence the care of people with epilepsy. The study supports UCB in its pursuit to bring new solutions to the epilepsy community.