Online Patient Platform Improves Epilepsy Self-Management

July 22, 2015

Patients with epilepsy who participated in an online patient community showed improved ability to manage their condition well by making good medical decisions, according to a new study.

The study, published in the July 14 issue of Neurology, showed that patients with epilepsy taking part in the "Patients Like Me" online platform had improvements in "self-management" and "self-efficacy" of their condition.

Lead author, John D. Hixson, MD, University of California–San Francisco, explained to Medscape Medical News that these endpoints measured whether patients were making good decisions about how they managed their condition.

"Self-efficacy measures whether a patient knows the right thing to do, while self-management measures what the patient actually does. We chose these endpoints as they are validated metrics that reflect well what the online platform is suppose to deliver — helping patients manage their condition themselves."

He pointed out that "Patients Like Me" is one of several online patient platforms available. These platforms are typically rooted in social media and allow patients to communicate with each other on forums. They also have educational videos and specific tools for tracking frequency and severity of seizures and recording medication side effects.

"This was a real-world study. It is the first study to do a rigorous assessment of this type of platform using validated measures," Dr Hixson said.

The researchers asked patients questions about how they managed their epilepsy before and after taking part in the online platform. Dr Hixson noted: "These included questions such as what they would do if they were running out of medication on a Friday; did they use a pill reminder system; what level of alcohol did they consume? Many patients are not well educated on these issues."

The biggest effect was seen on "information management," which addressed the question of whether patients used tools to help them manage their condition. Dr Hixon elaborated that this would include whether they have a system for tracking their seizures. "This can make a big difference when it comes to reporting their symptoms to their physician, which in turn can affect changes in medications."

"The sorts of things that are addressed on these patient platforms are things that are often missed out in a consultation with a physician, who typically has to cram the whole appointment into 8 minutes," he added. "They need to know they can direct patients to these sites where there is a wealth of information."

Noting that patient engagement has been suggested to be "the blockbuster pill of the 21st century," Dr Hixson says improvements in self-efficacy and self-management is the first step toward improving care. "The next stage would be to see whether this led to better healthcare utilization, better adherence to medication, and ultimately whether it will reduce seizure frequency."

For the study, 249 veteran patients with epilepsy were asked to fill in questionnaires about their management of their condition, before and after engaging with the "Patients Like Me" platform for at least 6 weeks.

Results are based on the 92 patients who completed both surveys. These showed that over 6 weeks, patients improved their epilepsy self-management (Epilepsy Self-Management Scale [ESMS] total score improved from 139.7 to 142.7; P = .02) and epilepsy self-efficacy (Epilepsy Self-Efficacy Scale total score improved from 244.2 to 254.4; P = .02).

The greatest effect was on the ESMS information management score, which improved from 20.3 to 22.4 (P = .001).

A user satisfaction questionnaire was administered at the end of the follow-up survey. More than a quarter of patients said that they had met a new person with epilepsy on the website, and 10% considered this new person to be a friend. Nearly half agreed or strongly agreed that the patient platform gave them more or better control over their condition and helped them understand their seizures.

Funding for this project was provided by a research grant from UCB, Inc. Dr Hixson received research support from UCB Pharma Inc. as the principal investigator for this study.

Neurology. 2015;8:129-136. Full text


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