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The Policy for Optimal Epilepsy Management Study (P.O.E.M.): PatientsLikeMe for U.S. Veterans
Upper Lobby
The Policy for Optimal Epilepsy Management Study (P.O.E.M.): PatientsLikeMe for U.S. Veterans
Assistant Professor of Neurology, UCSF/VAHSF
BackgroundEpilepsy is a seizure disorder that causes significant burden on quality of life.  Although medication and surgery can control seizures in some patients, the impact of the disease may be mediated... Read more

Description

Background

Epilepsy is a seizure disorder that causes significant burden on quality of life.  Although medication and surgery can control seizures in some patients, the impact of the disease may be mediated by improving psychosocial variables (e.g. social support, locus of control, self-efficacy).  Medical social media websites offer the potential to improve these variables. PatientsLikeMe (PLM) is a free website that focuses on patient engagement.  Users are encouraged to share health data, find other patients like them and learn from others online. PLM has more than 7,000 users with epilepsy.  The San Francisco VA Medical Center Epilepsy Center of Excellence is examining whether and how PLM can improve patient self-efficacy and self-management of epilepsy in their Veteran population.

Methods

The POEM study is open to U.S. Veterans with epilepsy who have never used PLM. A mixed method recruiting approach includes: mail and email invitations, clinic flyers, and local and national advertising. The recruitment goal is 200 participants based on a pilot study conducted prior to the POEM launch. The co-primary outcomes are pre-post change in self-efficacy and self-management. These outcomes are measured using the previously validated Epilepsy Self-Management Scale (ESMS) and Epilepsy Self-Efficacy Scale (ESES). ESMS measure the frequency of using self-management techniques and ESES measures confidence of managing epilepsy. Both have sub-scales that measure domains of epilepsy self-management and self-efficacy respectively. Participants in the study are directed to the study website (www.poemstudy.com) to consent and take the baseline survey.  Participants then use PLM as often as they wish.  Data on use is collected by PLM as part of regular operations and is obtained for each participant’s six week study period. After six weeks participants are invited to a follow-up survey. Our primary hypothesis is that change in self-management and self-efficacy will be positive and increasing with increasing use of PLM (measured by unique logins to the PLM website over the 6 week study period).  This study has been approved by the UCSF IRB.

Results

As of March 1st 2013, 62 participants are enrolled and have completed a baseline survey.  The average age of participants is 58 years (SD: 13.6, range 23-89) and participants are primarily male (87%) and non-hispanic white (76%).  Mean likert scores for ESMS are 3.7 (5 point scale; SD 0.4) and for ESES 7.7 (11-point scale; SD 1.5). The lowest mean sub-scale score found to date is within the ESMS for frequency of information management (e.g. writing down when seizures happen) (mean 2.3, SD 1.0).

Conclusions

The preliminary observations from this ongoing study have found that Veterans with epilepsy are interested in an online tool such as PLM. Interestingly, Veteran participants are somewhat different from the established PLM epilepsy population, which is more female and younger.  Results to date suggest that participants may not frequently self-manage information relevant to their epilepsy; however, online tracking is a key feature of PLM. Future analysis will examine whether PLM improves self-management and self-efficacy in this population.

Dr. John Hixson is an Assistant Professor of Neurology at UCSF and the San Francisco VA Medical Center.  Additionally, he serves as Associate Chief of Staff for Clinical Informatics at the SF VAMC, and is integral in the national Health Informatics Initiative.  Through this work, Dr. Hixson is primarily focused on patient-facing software development and the treatment of patient-generated health data.  He also is the principal investigator for a national VA-based study of the PatientsLikeMe platform in a cohort of Veterans with epilepsy.  Dr. Hixson attended medical school at Johns Hopkins University and completed his Neurology residency at the University of Pennsylvania.

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