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Neurology. 2015 Jul 14;85(2):129-36. doi: 10.1212/WNL.0000000000001728. Epub 2015 Jun 17.

Patients optimizing epilepsy management via an online community: the POEM Study.

Author information

1
From the Departments of Neurology (J.D.H., K.P.), Psychiatry (D.B.), and Epidemiology & Biostatistics (D.B.), University of California San Francisco and the SF VA Medical Center; US Medical Affairs (T.D.), UCB, Inc.; Northern California Institute for Research and Education and the SF VA Medical Center (S.V.B.); and PatientsLikeMe (A.G., P.W.). john.hixson@ucsf.edu.
2
From the Departments of Neurology (J.D.H., K.P.), Psychiatry (D.B.), and Epidemiology & Biostatistics (D.B.), University of California San Francisco and the SF VA Medical Center; US Medical Affairs (T.D.), UCB, Inc.; Northern California Institute for Research and Education and the SF VA Medical Center (S.V.B.); and PatientsLikeMe (A.G., P.W.).

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.

PMID:
26085605
PMCID:
PMC4515038
DOI:
10.1212/WNL.0000000000001728
[Indexed for MEDLINE]
Free PMC Article

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