Historically, the majority of health care interactions and decision-making has occurred in a doctor’s office or hospital, despite the fact that patients live and experience their health at home, in the workplace, or in their communities. Digital and mobile health tools are now providing an innovative mechanism for engaging patients when they are away from traditional healthcare environments. Chronic conditions, such as epilepsy, require ongoing medical treatment integrated with patient education and longitudinal care through self-management practices. Web-based self-management programs have already been proven to be as effective as face-to-face therapies and can circumvent traditional barriers to care such as cost and travel distance.1,2 For patients with epilepsy, some early research on Internet self-management tools has demonstrated positive impact, although the magnitude and clinical applicability remains unclear.2-4
Supported by UCB, researchers at the VHA Epilepsy Centers of Excellence (ECOE) paired with PatientsLikeMe (PLM, www.patientslikeme.com) to develop and evaluate a novel online platform to improve the care of Veterans with epilepsy. PatientsLikeMe is a free online community where people with chronic medical conditions can find other patients like them, share their disease experiences and outcomes, and learn how to improve their care through peer-to-peer interactions.
The POEM (Policy for Optimal Epilepsy Management) study assessed the impact of the digital health management platform (PLM) in a population of U.S. Veterans with epilepsy. The intervention included a social media forum, condition-specific tracking tools, and educational resources.
Participants initially completed two validated surveys measuring patient confidence and frequency in patient self-management practices: the Epilepsy Self-Management Scale (ESMS) (Likert Scale 1-5, 38 items, range 38-190) and the Epilepsy Self-Efficacy Scale (ESES) (Likert Scale 0-10, 33 items, range 0-330). Upon completion, participants were directed to the PatientsLikeMe platform and engaged at their own discretion. After six weeks, study members were asked to complete the surveys again.
A total of 249 Veterans with epilepsy consented, were validated, joined the platform, and then completed the first set of surveys. The mean age was 50.2 years, 80.7% were male, and 75.1% were non-Hispanic white, consistent with U.S. Veteran demographics. At the conclusion of the study, 92 participants (36.9%) completed the second survey set. Scores improved over six weeks for both the ESMS and ESES surveys, with statistical significance demonstrated for both. The greatest change was observed on the ESMS information management subscale, which assesses the participant’s ability to use and incorporate digital solutions into their everyday life.
In terms of participant usage of the platform, data was analyzed for the 92 participants who completed both the initial and final survey sets. Within this group, the median number of log-ins was 5 (range 0-80) during the six-week study period. Results showed 15.2% posted to the publicly-viewed discussion forum, 8.7% left a profile comment on another patient’s individual page, and 29.4% sent a private message to another member of the PLM community. Additionally, at the end of the study, 48.9% of these participants reported that the experience gave them more or better control over their condition, and 43.5% stated that it helped them better understand their seizures.
This pragmatic study of an online health management platform demonstrated statistically significant improvements in established epilepsy metrics of patient self-management and self-efficacy. Additionally, for the patients completing the full study, there was a significant level of activity and usage on the forum, despite the fact that this population does not represent a demographic that traditionally seeks out digital solutions. This work demonstrates the potential impact of digital health solutions in epilepsy among all patient populations and serves as a foundation for further research.
1. Beatty L, Lambert S. A systematic review of Internet-based self-help therapeutic interventions to improve distress and disease-control among adults with chronic health conditions. Clinical Psychology Review. Mar 25 2013;33(4):609-622.
2. Lorig KR, Ritter PL, Laurent DD, Plant K. Internet-based chronic disease self-management: a randomized trial. Medical Care. Nov 2006;44(11):964-971.
3. DiIorio C, Bamps Y, Walker ER, Escoffery C. Results of a research study evaluating WebEase, an online epilepsy self-management program. Epilepsy & Behavior. Nov 2011;22(3):469-474.
4. Pramuka M, Hendrickson R, Zinski A, Van Cott AC. A psychosocial self-management program for epilepsy: a randomized pilot study in adults. Epilepsy & Behavior. Dec 2007;11(4):533-545.