22-06-2015 | Study outlines benefits of online epilepsy community

22 June 2015
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Being part of an online community may help people with epilepsy better manage their condition according to a new study published online last week in the journal Neurology.

The research included 92 epilepsy patients who participated in an online forum called PatientsLikeMe for six weeks. Participants can share information and provide mutual support, while the site also has tools for tracking seizures, symptoms and medications.

Participants completed questionnaires about their ability to manage their epilepsy at the start and end of the study. The largest improvements recorded were in managing information about their condition, such as tracking seizures in a diary and tracking side effects. Patients also became more confident about taking care of themselves e.g. getting enough sleep, avoiding seizure triggers.

The study concluded that patients with chronic conditions are increasingly encouraged to self-manage their condition, and digital communities have potential advantages, such as convenience, scalability and building a community support network.

"Formal, in-person education can be expensive and difficult to coordinate, especially when people live in rural areas," said study author Dr. John Hixson, from the University of California San Francisco. "We wanted to see whether an online community could benefit people with epilepsy. The overall improvements were modest, but they were similar to those seen with other, more resource-intensive education programs. This study shows that online communities may be a feasible, convenient method for improving care for people with epilepsy".

More on the study:

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