Patients optimizing epilepsy management via an online community

Abstract

Objective:The study objective was to test whether engaging in an online patient community improves self-management and self-efficacy in veterans with epilepsy.Methods:The study primary outcomes were validated questionnaires for self-management (Epilepsy Self-Management Scale [ESMS]) and self-efficacy (Epilepsy Self-Efficacy Scale [ESES]). Results were based on within-subject comparisons of pre- and postintervention survey responses of veterans with epilepsy engaging with the PatientsLikeMe platform for a period of at least 6 weeks. Analyses were based on both completer and intention-to-treat scenarios.Results:Of 249 eligible participants enrolled, 92 individuals completed both surveys. Over 6 weeks, completers improved their epilepsy self-management (ESMS total score from 139.7 to 142.7, p = 0.02) and epilepsy self-efficacy (ESES total score from 244.2 to 254.4, p = 0.02) scores, with greatest impact on an information management subscale (ESMS–information management total score from 20.3 to 22.4, p < 0.001). Results were similar in intention-to-treat analyses. Median number of logins, postings to forums, leaving profile comments, and sending private messages were more common in completers than noncompleters.Conclusions:An internet-based psychosocial intervention was feasible to implement in the US veteran population and increased epilepsy self-management and self-efficacy scores. The greatest improvement was noted for information management behaviors. Patients with chronic conditions are increasingly encouraged to self-manage their condition, and digital communities have potential advantages, such as convenience, scalability to large populations, and building a community support network.Classification of evidence:This study provides Class IV evidence that for patients with epilepsy, engaging in an online patient community improves self-management and self-efficacy.

Optimising epilepsy management with a smartphone application: a randomised controlled trial

“…Statistically significant improvements in self‐efficacy and self‐management measures in American veterans with epilepsy were achieved with an online psychosocial intervention over six weeks (POEM study); another recent study similarly reported that an epilepsy self‐management program improved ESMS scores . In our study, self‐management, as assessed by C‐ESMS scores, also improved for patients using the app, but the magnitude of the change was considerably greater than in earlier studies.…”

“…Supporting self‐management by people with chronic diseases facilitates expanding the provision of health care from doctors to the patients themselves . Clinic‐based mobile health decision support for enhancing self‐management by adults with epilepsy and WebEase, an online epilepsy self‐management program that assists people with medications, managing stress, and improving sleep quality, have been described in the literature; an internet‐based psychosocial intervention was reported to have improved self‐management and self‐efficacy in American veterans with epilepsy . Our findings suggest that a mobile phone app can have a substantial effect on epilepsy self‐management and may reduce seizure frequency.…”

“…The 6‐month C‐ESMS completion rate (86%) was higher than for similar studies (about 40%) . Possible explanations include the fact that eligible participants were carefully enrolled and supervised during follow‐up; a recent uncontrolled seizure may motivate a patient to attend follow‐up; a friendly doctor–patient relationship was developed during the clinical consultations; and most of our participants were well educated younger patients who had agreed to participate in the study and were therefore inclined to adhere to the treatment program.…”

“…One possible explanation might be the lower baseline scores in our study. Whereas the greatest improvement reported in the POEM study was in the domain of information management, we also found statistically significant improvements in medications and safety management. These differences may have several reasons: the lower baseline C‐ESMS scores in our study allowed greater increases during the intervention; the app intervention included a component of active patient engagement that strengthened medical compliance, rather than passively providing educational materials alone; and the younger age of our participants may have been associated with better acceptance of the app and more active participation.…”

“…In accordance with an earlier publication and our pilot baseline data, a sample size of 150 subjects in each group was adequate for detecting a change in C‐ESMS score of 6 points (C‐ESMS standard deviation, 15 points) with 90% power (two‐tailed α = 0.05; β = 0.1).…”