Self-Management and Community-Building Website Helps Veterans with Epilepsy

VBCN - July 2015 Volume 2, No 2 - Epilepsy Management
Rosemary Frei, MSc

The PatientsLikeMe.com website helps veterans with epilepsy to interact with each other and to report their adverse events and improvement, according to a recent article. John D. Hixson, MD, Associate Professor of Neurology, University of California, San Francisco, and his colleagues showed that self-management and self-efficacy improved among patients with epilepsy who use the website (Hixson JD, et al. Neurology. 2015;85:1-8).

PatientsLikeMe, an online patient network with 350,000 members, signed a research collaboration agreement with the FDA on June 15, 2015, to use the network’s data to help monitor risk assessment and management of therapies for patients with epilepsy and other diseases.

“The value of an online platform is that it is scalable and hopefully accessible to a much larger number of people—and at a much lower cost—than face-to-face interactions with providers,” Dr Hixson told Value-Based Care in Neurology.

Dr Hixson and his colleagues surveyed 249 veterans with epilepsy who are members of PatientsLikeMe.com. The researchers offered incentives for the participants to continue being engaged, such as becoming part of an exclusive veterans’ discussion forum and receiving information on epilepsy care within the Veterans Administration Epilepsy Centers of Excellence system. Of the 249 veterans surveyed, 92 (37%) completed the baseline survey and a second survey approximately 6 weeks later.

The results showed a significant average increase in the full Epilepsy Self-Management Scale (ESMS) and Epilepsy Self-Efficacy Scale (ESES) scores from baseline to the 6-week follow-up. Among people who fully completed both surveys, ESMS total scores increased by an average of 2.9 points (P = .02), and their ESES total scores increased by an average of 10.2 points (P = .02).

The patients’ scores increased most markedly—by 5.1 points—on the ESES general self-efficacy subscale score from baseline (P = .008). This subscale measures lifestyle behaviors such as whether patients attend their medical appointments.

The largest improvement in the ESMS subscales was a 2.1-point increase in average scores on the information management subscale (P <.001), which assesses whether patients track their side effects or use a seizure diary and other tools to ensure medication adherence.

The median number of log-ins to the website was 5. The number of log-ins was not associated with a change in ESMS or ESES scores. This was likely because the study was not powered to test for those associations, speculated Dr Hixson. The only factor that was linked to increases in ESES or ESMS scores was lower scores at baseline—that is, people who had the most room to improve were most likely to do so, according to Dr Hixson.

Respondents indicated they had significant benefits from the program. For example, 26% said they met a new person with epilepsy on the website, and 10% said that person had become a friend. Almost 50% said that using the website increased their feeling of control over their condition, 43% said it helped them understand seizures, and 35% indicated the website helped them reduce treatment side effects.

Dr Hixson hopes this will propel the use of self-management programs like PatientsLikeMe in medical clinics, such as epilepsy specialists referring all their patients to such programs.

“I’m not aware of a widespread clinical use of this form of patient education,” said Dr Hixson. “The FDA agreement with PLM [PatientsLikeMe] is very new and, to my knowledge, not a direct clinical tool for providers and patients to improve self-management. It is more a surveillance effort to identify side effects and adverse events in larger groups of patients.”

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