“Epilepsy is a complicated disease, and many people who live with it are not well informed about their condition and how to manage it,” said study author John D. Hixson, MD, of the University of California San Francisco and the San Francisco VA Medical Center and a member of the American Academy of Neurology. “Formal, in-person education can be expensive and difficult to coordinate, especially when people live in rural areas.
We wanted to see whether an online community could benefit people with epilepsy.” For the study, veterans were asked to participate for six weeks in the online patient community called PatientsLikeMe, which provides a forum for people with epilepsy to share information and support as well as digital tools for tracking seizures, symptoms and medications. Participants could use the website as much or as little as they wanted during the study. They filled out questionnaires on their ability to manage the disease at the beginning of the study and after six weeks. A total of 92 people completed both surveys.
Scores on the survey measuring how confident people were in managing their own care increased by 10 points during the study, from 244 points to 254 out of a possible 330. On the survey of how frequently participants performed activities to manage their care, such as getting enough sleep and avoiding seizure triggers, the participants improved by two points, from 140 to 142 out of a possible 190 points.
The biggest gains were in managing information about their disease, such as tracking seizures in a diary and tracking side effects. “The overall improvements were modest, but they were similar to those seen with other, more resource-intensive education programs,” Hixson said. “This study shows that online communities may be a feasible, convenient method for improving care for people with epilepsy.” The study was supported by the pharmaceutical company UCB Inc., which is also a partner of PatientsLikeMe. PatientsLikeMe is run by a for-profit company. It supports online communities for more than 2,000 conditions. To learn more about epilepsy, please visit www.aan.com/patients.
The American Academy of Neurology, an association of more than 28,000 neurologists and neuroscience professionals, is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer’s disease, stroke, migraine, multiple sclerosis, concussion, Parkinson’s disease and epilepsy.
American Academy of Neurology