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.
Highlights
Self-management skills, including medication management, are vital to the health of adolescents and young adults with systemic lupus erythematosus (SLE)
This study examines the feasibility of recruitment for a trial examining the effect of participation in an online educational website for adolescents and young adults with SLE, with and without social media participation
We found a significant improvement in medication adherence for HCQ in adolescents and young adults with SLE using an online educational intervention that was enhanced by additional involvement in a social media intervention
Summary
Self-management skills, including medication management, are vital to the health of adolescents and young adults with systemic lupus erythematosus (SLE). Learning to live with systemic lupus erythematosus (SLE) can be extremely difficult for children who are affected and for their parents. Self-management skills are vital to the physical and emotional health of these patients [1]. Non-adherence with medications in patients with systemic lupus has been noted to be as poor as 40% [2, 3]. Much attention has been paid to how to improve self-management skills in adults, but less is known about how to target adolescents, an age group with a complex set of emotional and developmental needs
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