Evidence map›Paper›PMID 26085605›Full record

Trial reportNeurology2015

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

John D Hixson, Deborah Barnes, Karen Parko, Tracy Durgin, Stephanie Van Bebber, Arianne Graham, Paul Wicks

Open access · hybridAbstract readClinical Trial
In one paragraph

Trial report in Neurology, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
20citing papers in PubMed, 1 pooled it
4.6field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

20 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.

  1. Pooled it
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  6. Review
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  14. Article
  15. Self-Management in Epilepsy Care: Untapped Opportunities.Federal practitioner : for the health care professionals of the VA, DoD, and PHS · 2018
    Article
  16. Article
  17. Article
  18. Providing Quality Epilepsy Care for Veterans.Federal practitioner : for the health care professionals of the VA, DoD, and PHS · 2016
    Article
  19. Article
  20. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors at 1 institution in 1 country.

John D HixsonFrom 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.
Deborah BarnesFrom 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.).
Karen ParkoFrom 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.).
Tracy DurginFrom 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.).
Stephanie Van BebberFrom 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.).
Arianne GrahamFrom 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.).
Paul WicksFrom 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.).
Northern California Institute for Research and Education · US

Funding

Improving advance care planning for seniors at risk for Alzheimers disease and related dementias and their caregiversR01AG045043 · NIA · NORTHERN CALIFORNIA INSTITUTE/RES/EDU · PI SUDORE, REBECCA L · 2013 to 2017
$3.2M
NIA NIH HHS R01 AG045043
6 · The paper itself

Abstract

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 EVIDENCE: This study provides Class IV evidence that for patients with epilepsy, engaging in an online patient community improves self-management and self-efficacy.

Indexed as

Community NetworksInternetAdultEpilepsyFemaleHumansMaleMiddle AgedOnline SystemsResidence CharacteristicsSelf CareSelf EfficacySocial SupportVeterans

Identifiers

PMID26085605
PMCPMC4515038
OpenAlexW2128866761

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.