Online Community a Boon to Patients With Epilepsy

Pauline Anderson

June 17, 2015

Participating for 6 weeks in an Internet-based program that provides epilepsy-focused practical advice and social connections, as well as digital tools for tracking seizures, symptoms, medications and comorbidities, helps patients manage their condition, according to new research.

The study showed that participants' total scores for both self-management and self-efficacy improved significantly over the course of the study. An information management measure that helped patients do things like track seizures was also significantly improved.

The study provides "foundational" evidence for the potential benefit of online patient-driven communities and self-management platforms for epilepsy, the authors, led by John Hixson, MD, Department of Neurology, University of California, San Francisco, write.

Many study participants agreed that the program, Patients Like Me (PLM), gave them more or better control over their condition.

The report is published online June 17 in Neurology.

Foundational Evidence

The study enrolled US veterans with epilepsy who completed validated surveys, including the following:

  • Epilepsy Self-Efficacy Scale (ESES), a 33-item questionnaire that measures patients' confidence in managing their own care related to epilepsy and that includes 3 subscales: medication management (eg, compliance), seizure management (eg, managing triggers), and general management (eg, attending appointments)

  • Epilepsy Self-Management Scale (ESMS), a 38-item scale that assesses frequency of behaviors related to medication (eg, adverse effect management), safety (eg, avoiding hazards), seizures (eg, planning self-care), information (eg, tracking seizures in a diary), and lifestyle (eg, sleep, diet)

Of the 453 patients assessed for eligibility, 249 completed the first survey (they were included in the intention-to-treat [ITT] analysis) and 92 (37%) completed the second survey (these were included in the completer analysis).

The mean age of the ITT population was 50.2 years. The authors had anticipated that a greater number of younger veterans (from, for example, Operation Iraqi Freedom and Operation Enduring Freedom) would be attracted to the concept of a digital health platform.

In the ITT population, 75.1% were non-Hispanic white. Almost one third (30.9%) reported their health as fair or poor and two thirds were not working for pay (65.3%) or were on disability (63.6%).

There were no demographic differences between noncompleters and completers.

The study found that ESMS total scores increased 1.1 points (P = .02) in the ITT analysis and 2.9 points (P = .02) in the completer analysis. The ESMS subscale with the greatest improvement was information management, which increased 0.9 point in the ITT analysis and 2.1 points in the completer analysis (both P < .001).

ESES total scores increased 3.6 points (P = .03) in the ITT analysis and 10.2 points in the completer analysis (P = .02). The greatest ESES improvement was for general self-efficacy, which increased 1.8 points (P = .014) in the ITT analysis and 5.1 points (P = .008) in the completer analysis.

With this evidence of improved self-management, it's reasonable to hypothesize that this type of online intervention could affect healthcare utilization, morbidity, and even epilepsy-related mortality, said the authors.

Compelling Exploration

"Based on our results, 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," they write. "Indirect effects of improved psychosocial support, such as work productivity, absences from work or school, and measures of social integration, might also be interesting measures to investigate."

At the end of the study, participants filled out a user satisfaction survey. More than a quarter of completers reported having met a new person with epilepsy, and 10% considered this new person to be a friend. Close to 50% agreed or strongly agreed that PLM gave them more or better control over their condition and helped them understand their seizures.

While there's a growing recognition of the importance to patients of psychosocial support, education, and self-management tools, many people with epilepsy are not provided with adequate access or resources under the current healthcare "ecosystem," said the authors.

A possible limitation of the study was that it lasted only 6 weeks, which might have been too brief to accurately gauge long-term changes in self-management behaviors, said the authors. As well, the study didn't include a control group.

Funding for this project was provided by UCB Inc. and was managed through the Northern California institute for Research and Education, San Francisco. Dr Hixson received research support from UCB Pharma Inc. as the principal investigator for this study. He has previously received research support from the American Epilepsy Society and the American Academy of Neurology. He also receives consulting fees from Lumetra Healthcare Solutions and the California Medical Board.

Neurology. Published online June 17, 2015. Abstract

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