title: Patients optimizing epilepsy management via an online community: the POEM Study.
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.
  
  
  METHODS
  This study provides Class IV evidence that for patients with epilepsy, engaging in an online patient community improves self-management and self-efficacy.
authors.affiliation: 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.
authors.forename: John D
authors.initials: JD
authors.lastname: Hixson
authors.affiliation: 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.).
authors.forename: Deborah
authors.initials: D
authors.lastname: Barnes
authors.affiliation: 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.).
authors.forename: Karen
authors.initials: K
authors.lastname: Parko
authors.affiliation: 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.).
authors.forename: Tracy
authors.initials: T
authors.lastname: Durgin
authors.affiliation: 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.).
authors.forename: Stephanie
authors.initials: S
authors.lastname: Van Bebber
authors.affiliation: 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.).
authors.forename: Arianne
authors.initials: A
authors.lastname: Graham
authors.affiliation: 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.).
authors.forename: Paul
authors.initials: P
authors.lastname: Wicks
mesh_terms: D000328:Adult; D019058:Community Networks; D004827:Epilepsy / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D009862:Online Systems; D012111:Residence Characteristics; D012648:Self Care / Q000379:methods*; D020377:Self Efficacy; D012944:Social Support; D014728:Veterans