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Patients optimizing epilepsy management via an online community: the POEM Study.
- Author(s): Hixson, John D;
- Barnes, Deborah;
- Parko, Karen;
- Durgin, Tracy;
- Van Bebber, Stephanie;
- Graham, Arianne;
- Wicks, Paul
- et al.
Published Web Locationhttp://m.neurology.org/content/early/2015/06/17/WNL.0000000000001728.full.pdf
No data is associated with this publication.
ObjectiveThe study objective was to test whether engaging in an online patient community improves self-management and self-efficacy in veterans with epilepsy.
MethodsThe 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.
ResultsOf 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.
ConclusionsAn 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 evidenceThis study provides Class IV evidence that for patients with epilepsy, engaging in an online patient community improves self-management and self-efficacy.
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