Online Community Optimizes Epilepsy Management


Digital communities and online self-management tools have the potential to improve clinical outcomes among epilepsy patients.

Digital communities and online self-management tools have the potential to improve clinical outcomes among epilepsy patients, according to a new study.

Patients with chronic conditions are increasingly encouraged to self-manage their condition, and digital communities have the advantages of convenience, access to large populations, and building a community support network.

“We found that veterans with epilepsy who enrolled in an online patient community reported statistically significant improvements in previously validated self-efficacy and self-management measures,” wrote researchers led by John D. Hixson, MD, Associate Professor of Neurology at the University of California at San Francisco.

The researchers conducted a prospective study of 249 US veterans with epilepsy using validated survey measures of self-management and self-efficacy to determine the effectiveness of a patient-powered research network, PatientsLikeMe.

The 92 individuals who completed surveys over 6 weeks showed improvement in epilepsy self-management and epilepsy self-efficacy scores, with the greatest impact on an information management subscale.

Information management includes the use of a seizure diary, tracking of side effects, and tools for medication adherence. “This result potentially demonstrates that study participants believed that the availability of online tracking tools or social support mechanisms improved their self-management capabilities,” they wrote.

About half of the participants agreed that the online network gave them more or better control over their condition and helped them understand their seizures.

The platform was accepted and used by a broad cohort of patients. Older patients participated at the same rate as younger patients.

The median number of logins, postings to forums, leaving profile comments, and sending private messages were more common in completers than non-completers.

The researchers suggested that patients who are offered this type of service through their health care providers might overcome some of the self-selection bias typical of online communities.

“It is reasonable to hypothesize that this type of online intervention could positively affect other metrics of epilepsy health, such as health care utilization, morbidity, and even epilepsy-related mortality,” they wrote. “We think that it would be compelling to explore more objective metrics of epilepsy-related health, such as emergency services utilization, frequency of interactions with epilepsy care teams, and medication adherence.”

Traditional medications and other technological interventions remain the essential elements of epilepsy treatment. However, there is a growing recognition of the importance of psychosocial support, education, and self-management tools for patients.

“As a cost-effective and more time-efficient alternative, online networks and management platforms offer more ubiquitous accessibility and a larger support system than traditional methods,” they concluded.

Epilepsy Websites for Patients

Epilepsy Foundation Helpline. This 24/7 helpline has trained information specialists available to answer questions about epilepsy and seizures and provide support, guidance, and access to national and local resources.

PatientsLikeMe.  This network provides an epilepsy-specific support system, as well as digital tools for tracking seizures, symptoms, medications, and comorbidities.

EpilepsyU. This online resource offers information and epilepsy education and access to educational materials, social networking, and group forums.

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