Lupus Foundation of America to Present Findings on Lupus Self-Management Program, SELF, at American College of Rheumatology Annual Meeting
SELF program evaluation provides valuable insights, improving user experience
The Lupus Foundation of America (LFA) will be presenting findings from a program evaluation of Strategies to Embrace Living with Lupus Fearlessly (SELF), an online lupus self-management program based on the Transtheoretical Model of Behavior Change (TTM), at the American College of Rheumatology’s Convergence annual meeting, taking place November 3-9.
The abstract, Feasibility and Acceptability of an Online Intervention for Lupus Self-Management Based on the Transtheoretical Model of Change, outlines an evaluation of an evidence-based online self-management program developed under a cooperative agreement with the U.S. Centers for Disease Control and Prevention. The evaluation revealed challenges to enrollment and retention in SELF that led to program changes designed to improve the sign-up and onboarding process. Findings from the SELF evaluation also revealed a great need among people with lupus for improving their self-management skills, with only 1 in 5 program participants at baseline having mastered 10 or more skills needed to manage lupus.
“People with lupus, rheumatologists, and behavioral science experts have worked very closely with the Lupus Foundation of America to develop the SELF program, from its design to testing and analysis,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. “During the SELF evaluation phase, we were able to identify and apply valuable insights for optimizing the self-management program, including adding social login and text/email reminders, and reducing the length of the onboarding and assessment, ultimately making SELF more useful and accessible for people with lupus.”
The SELF program offers personalized support at each participant’s own pace to adopt four key lupus self-management behaviors: managing symptoms, stress, medications and working with their health care team.
SELF was evaluated using a mixed methods approach to assess the feasibility and acceptability of the program among 155 people with lupus. Program participants were recruited from three academic medical centers and the LFA constituency to participate in SELF for 90 days. The intake assessment was completed by 62% of participants and 28% actively engaged throughout the evaluation period. Of those who completed the program, 57% mastered new self-management skills. Most SELF participants gave favorable opinions on the program, noting managing stress and symptoms as the most popular modules.
Additionally, during the upcoming ACR meeting, Dr. Jane Salmon, Collette Kean Research Professor at Hospital for Special Surgery, will present results of research to develop an algorithm to predict adverse pregnancy outcomes (APO) in high-risk pregnancies in patients with antiphospholipid syndrome (APS). The abstract, Predicting Adverse Pregnancy Outcomes in Women with Systemic Lupus Erythematosus: A Comparison of Machine Learning Methods, explores performance of novel and increasingly popular machine learning (ML) approaches for predicting APO. Nearly 20% of pregnancies in patients with systemic lupus erythematosus (SLE) result in an APO. This research complements the IMPACT Study (IMprove Pregnancy in APS with Certolizumab Therapy) funded by the LFA.
Lead principal investigator, Dr. Gary S. Gilkeson of the Medical University of South Carolina (MUSC) will present two abstracts on research findings from a LFA-funded Phase II Mesenchymal Stromal Cell (MSCs) trial. The first abstract, Interim Analysis of Cohort 1 in the Mesenchymal Stromal Cell Trial in Systemic Lupus Erythematosus: Safety and Data Management During the Pandemic (MiSLE), addresses heightened interest in the use of MSCs for the treatment of autoimmune diseases, specifically the efficacy of MSCs with minimal safety concerns in lupus. The MiSLE trial is a two-cohort dose escalation trial at nine centers in the United States. A total of 81 patients will be randomized. The first dose cohort is complete. In the second MSCs trial abstract, Longitudinal Changes in B Cell Subsets in Patients in the Mesenchymal Stromal Cell Trial in Lupus: Analysis of the First Cohort, Dr. Gilkeson shares insights on recent advances allowing for expanded identification of B cell subtypes of pathogenic potential in lupus.
Several more Lupus Foundation of America funded grantees and partners of the LFA will also be presenting on studies at the ACR meeting. To learn more about these studies and other important research coming out of the world’s premier rheumatology conference, check out the LFA’s Twitter feed.