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

Abstract Background Self-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. Methods Adolescents 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. Results Twenty-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. Conclusions This 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 registration Trial registration: NCT03218033. Retrospectively registered 14 July 2017

Short-term perioperative all-cause mortality and cardiovascular events in women with systemic lupus erythematosus.

OBJECTIVE: Persons with systemic lupus erythematosus (SLE) are at an increased risk of cardiovascular disease (CVD) events, but this excess CVD burden in the perioperative setting is yet to be determined. We aimed to determine the risk of perioperative short-term all-cause mortality and CVD events among women with SLE compared to those without SLE. METHODS: We conducted a cross-sectional analysis of pooled hospital discharge data of the Nationwide Inpatient Sample from 1998-2002. We abstracted diseases and procedures using International Classification of Diseases, Ninth Revision, Clinical Modification codes. The principal procedure was categorized into either a low, intermediate, or high risk level. Survey logistic regression adjusting for potential confounders provided estimates for stratum-specific odds of adverse events in women with SLE relative to those without SLE for each procedure risk level. RESULTS: All-cause mortality was significantly greater among women with SLE having a low- (odds ratio [OR] 1.54, 95% confidence interval [95% CI] 1.00-2.37) or a high-risk principal procedure (OR 2.52, 95% CI 1.34-4.75) relative to women without SLE, but did not differ significantly among persons with intermediate-risk procedures. Women with SLE with a low-risk procedure were also more likely to experience a composite CVD event relative to women without SLE (OR 1.40, 95% CI 1.04-1.87). CONCLUSION: Women with SLE are at an increased risk for short-term perioperative adverse events. These results highlight a need for greater scrutiny during perioperative evaluation and management of women with SLE