Lupus Foundation of America Alexandria, VA, United States
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Katherine Carpenter1, Melissa French2, Sarah Gilman3, Sara Johnson4, Patricia Castle4, S. Sam Lim5, Charmayne Dunlop-Thomas5, Melicent Miller1 and Mary Crimmings1, 1Lupus Foundation of America, Washington, DC, 2Lupus Foundation of America, Alexandria, VA, 3Wayfinder Health Strategies, Falls Church, VA, 4Pro-Change Behavior Systems, Inc., Narragansett, RI, 5Emory University, Atlanta, GA
Background/Purpose: The Lupus Foundation of America (LFA) has engaged in a 5-year cooperative agreement with the Centers for Disease Control and Prevention to implement a digital lupus self-management (SM) intervention based on the Transtheoretical Model of Change. Strategies to Embrace Living with Lupus Fearlessly (SELF) is designed to help users adopt 4 key lupus SM behaviors shown to have the highest impact on health and functional status: managing symptoms, managing stress, managing medications, and working with your healthcare team (each behavior includes 3-5 skills).
Methods: SELF offers user-tailored SM activities, symptom/medication trackers, a journal, links to LFA educators/peer support, and tailored text message tips. Onboarding and 90-day follow-up assessments collect demographics, stage of change for the 4 key SM behaviors , and patient-reported outcomes (PROs) such as measures of physical and mental health. Users select one SM behavior as a focus for a 2-week period. Activities are tailored to stage of change for that focus behavior. Users 'master a skill' if they improve from a skill-building stage at onboarding to a mastery stage at follow-up (Figure 1).
SELF was launched in January 2022 and promoted to people with lupus (PWL) via LFA and a patient registry. Utilization and outcomes were evaluated in January, 2023 for users who registered during the prior year.
Results: A total of 3,427 PWL registered for SELF, and 51% completed the onboarding assessment (n=1742) to gain access to the program.
Among SELF users for whom follow-up data were available (n=173), 46% (n=79) mastered 1 or more SM skills with many users mastering more (Figure 2); 52% experienced less fatigue ( p < .001, d = 0.33); 37% reported better overall physical health (p = .007, d = 0.22); 41% reported better mental health (p = .001, d = 0.28); 59% improved medication adherence (p = .004, d = 0.36); and 59% improved doctor-patient communication (p = .035, d = 0.16). For those who did not complete a follow-up assessment (n-1569), the impact of SELF cannot be known, but users completed 8.1 SM activities on average (range = 0 - 224). Enrollment disengagers (n=1685) did not complete the onboarding assessment. The engagement groups were similar (demographics in Table 1), but those who completed follow-up assessments had a higher average age, longer duration since diagnosis, and a higher percentage of Black, non-Hispanic users.
Conclusion: Improvements to SM skill development and PROs show that SELF is a promising program for building skills and impacting outcomes for PWL. Low engagement at onboarding and follow-up assessments indicates a need to ease response burden. While results need more study, it is notable that more users who completed the follow-up assessment were Black, a group historically experiencing greater health disparities.
Acknowledgement: The authors are grateful for the support of Kamil Barbour, Public Health Advisor for the Centers for Disease Control and Prevention.
Figure 1. Transtheoretical Model of Change (TTM) is shown with stages of change and progression of improvement to mastery.
Table 1. User demographics are shown for three distinct groups: Enrollment disengagers (people who registered for SELF but did not complete the onboarding assessment), SELF users who did not complete a 90-day follow-up assessment and SELF users who completed a 90-day follow-up assessment.
Figure 2. Among SELF users who completed the follow-up assessment, 46% mastered one or more additional SM skills. Across the 4 key SM behaviors, SELF users improved the % of skills mastered from onboarding assessment to follow-up assessment in every category.
K. Carpenter: None; M. French: None; S. Gilman: None; S. Johnson: None; P. Castle: None; S. Lim: None; C. Dunlop-Thomas: None; M. Miller: None; M. Crimmings: None.