Trial reportPediatric rheumatology online journal2018
Improvement of medication adherence in adolescents and young adults with SLE using web-based education with and without a social media intervention, a pilot study.
Trial report in Pediatric rheumatology online journal, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT03218033 (Improvement of Medication Adherence in Adolescents With SLE Using Web-based Education With and Without a Social Media Intervention), which is not on this map. Cited by 37 papers, 6 of them syntheses that pooled it.
What it found
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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.
Improvement of Medication Adherence in Adolescents With SLE Using Web-based Education With and Without a Social Media Intervention
Who cites it
37 citing papers in PubMed, 6 syntheses or guidelines pooled it.
- Efficacy of lifestyle interventions in the management of systemic lupus erythematosus: a systematic review of the literature.Rheumatology international · 2024Pooled it
- Pooled it
- Technology-Based Peer Support Interventions for Adolescents with Chronic Illness: A Systematic Review.Journal of clinical psychology in medical settings · 2022Pooled it
- Investigating the role of health information technology in the control and management of Systemic Lupus Erythematosus (SLE): a systematic review.BMC medical informatics and decision making · 2022Pooled it
- Pooled it
- Mobile health technologies for the management of systemic lupus erythematosus: a systematic review.Lupus · 2020Pooled it
- Trial
- Effects of family-centered empowerment program on illness acceptance and self-management of patients with type 2 diabetes: a randomized controlled trial.Scientific reports · 2025Trial
- Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus.Pediatric rheumatology online journal · 2020Trial
- Information Seeking and Engagement on Social Media Among Pediatric Solid Organ Transplant Recipients and Their Families.Pediatric transplantation · 2026Article
- Differences in Self-Reported Medication Nonadherence and Its Drivers in Young Adults Versus Older Adults With Systemic Lupus Erythematosus.The Journal of rheumatology · 2026Article
- Transforming lupus self-care education with mobile health: A systematic review.Journal of education and health promotion · 2026Review
- Involving young people in research investigating comorbidity associated with childhood-onset rheumatic disease: perspectives of a series of focus groups.BMC rheumatology · 2025Article
- Effect of an Electronic Pill Bottle on Hydroxychloroquine Adherence in Pediatric Lupus: Results of a Novel Direct-to-Family Pilot Trial.ACR open rheumatology · 2025Article
- Empowerment in Adolescent Patients with a Disability/Chronic Condition: A Scoping Review.Children (Basel, Switzerland) · 2024Review
- Article
- Implementation of a Clinician-led Medication Adherence Intervention Among Patients With Systemic Lupus Erythematosus.The Journal of rheumatology · 2024Article
- Social support and audience engagement of lupus-related posts on social networking sites in China.Heliyon · 2024Review
- Status of self-medication and the relevant factors regarding drug efficacy and safety as important considerations among adolescents aged 12-18 in China: a cross-sectional study.Scientific reports · 2024Article
- Experiences and Perspectives of Children and Young People Living with Childhood-Onset Systemic Lupus Erythematosus-An Integrative Review.Children (Basel, Switzerland) · 2023Review
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSelf-management skills, including medication management, are vital to the health of adolescents and young adults with systemic lupus erythematosus (SLE). The purpose of this study was to assess the feasibility and preliminary effects of an online educational program in a cohort of adolescent and young adults with SLE with and without a social media (SM) experience.
methodsAdolescents and young adults with SLE participated weekly for 8 sessions on a web-based educational program about SLE created specifically for this project. Subjects were randomized to respond to questions at the end of each weekly module in a journal or on a SM forum with other SLE subjects. Patients were surveyed prior to initiating the study, (T0) and 6 weeks after completion of the sessions (T1). Medication adherence for hydroxychloroquine, utilizing the medication possession ratio (MPR), was compared for the 3 months preceding T0 and for the 3 months following T1.
resultsTwenty-seven of the 37 subjects (73%) enrolled completed the study, including the two required sets of surveys. Reasons for being lost to follow up included being too busy, forgetting, and/or not seeing email reminders. Medication adherence improved in all subjects (p < 0.001). The percentage of the SM intervention group that was adherent (MPR ≥ 80%) significantly improved from 50% to 92% (p = 0.03), while the control group did not. Secondary outcome measures that improved, only in the SM group, included self-efficacy, sense of agency (SOA), sense of community (SOC), and empowerment. There was a strong correlation between empowerment with SOA and SOC and in turn a strong correlation with SOA and SOC with MPR, providing a possible explanation for why social media participation helped to improve medication adherence. Subjective reporting of medication adherence was not reliably correlated to MPR.
conclusionsThis pilot study has demonstrated feasibility for the use of an online educational SLE website, recruitment, and measurement of chosen outcome measures. This study provides evidence for a larger multi-site trial which has the potential to address an important service gap by delivering self-management education and peer interactions in a format that is accessible, and engaging to young people with SLE.
trial registrationTrial registration: NCT03218033 . Retrospectively registered 14 July 2017.
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