Trial reportNeurology2015
Patients optimizing epilepsy management via an online community: the POEM Study.
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.
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.
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.
Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 43 citations in OpenAlex.
- Behavioural interventions delivered through interactive social media for health behaviour change, health outcomes, and health equity in the adult population.The Cochrane database of systematic reviews · 2021Pooled it
- Neurobehavioral Signatures of Epileptogenesis: Molecular Programs, Trait-like Phenotypes, and Translational Biomarkers Beyond Seizures.International journal of molecular sciences · 2026Review
- Exploring Trends and Sentiments in Epilepsy Discussions: A Thematic Analysis of the r/Epilepsy Subreddit (2023-2024).Neurology international · 2026Article
- Companionship and Sharing Create Social Connections of an Online Community-Based Intervention for Patients with Cancer Receiving Outpatient Care: Pilot Study.JMIR cancer · 2025Article
- Online Health Communities: an alternative feasible data registry tool for developing countries.Health research policy and systems · 2023Article
- A Comprehensive Literature Search of Digital Health Technology Use in Neurological Conditions: Review of Digital Tools to Promote Self-management and Support.Journal of medical Internet research · 2022Review
- Conversations between women with vulval lichen sclerosus: a thematic analysis of online forums.BMC women's health · 2021Article
- Enhancing epilepsy self-management and quality of life for adults with epilepsy with varying social and educational backgrounds using PAUSE to Learn Your Epilepsy.Epilepsy & behavior : E&B · 2020Article
- Characteristics and Symptom Severity of Patients Reporting Systemic Lupus Erythematosus in the PatientsLikeMe Online Health Community: A Retrospective Observational Study.Rheumatology and therapy · 2020Article
- DiabetesSistersVoices: Virtual Patient Community to Identify Research Priorities for Women Living With Diabetes.Journal of medical Internet research · 2019Article
- Views of People With Epilepsy About Web-Based Self-Presentation: A Qualitative Study.Interactive journal of medical research · 2018Article
- Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States.The patient · 2018Article
- DigitalMe: a journey towards personalized health and thriving.Biomedical engineering online · 2018Article
- Scaling PatientsLikeMe via a "Generalized Platform" for Members with Chronic Illness: Web-Based Survey Study of Benefits Arising.Journal of medical Internet research · 2018Article
- Self-Management in Epilepsy Care: Untapped Opportunities.Federal practitioner : for the health care professionals of the VA, DoD, and PHS · 2018Article
- Mobile Software as a Medical Device (SaMD) for the Treatment of Epilepsy: Development of Digital Therapeutics Comprising Behavioral and Music-Based Interventions for Neurological Disorders.Frontiers in human neuroscience · 2018Article
- Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact.Journal of the American Medical Informatics Association : JAMIA · 2017Article
- Providing Quality Epilepsy Care for Veterans.Federal practitioner : for the health care professionals of the VA, DoD, and PHS · 2016Article
- Factors Contributing to Dropping-out in an Online Health Community: Static and Longitudinal Analyses.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2016Article
- DIY CBT for Comorbidities in Epilepsy.Epilepsy currentsArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 1 institution in 1 country.
Funding
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.
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What OpenQuestion holds
Registered trials
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.