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Impact of an online lupus self-management programme in an established, population-based cohort of adults with
Sarah D Gilman1,2, Sara Johnson3, Gaobin Bao4
1Wayfinder Health Strategies, Falls Church, Virginia, USA sarahgilman@wayfinderhs.com.
Objective:
Strategies to Embrace Living with Lupus Fearlessly (SELF) is an online self-management education programme for people with SLE. This mixed-methods study examines SELF's impact on patient-reported outcomes while assessing implementation outcomes informing feasibility and dissemination.
Methods:
A convergent mixed-methods design was used, merging qualitative and quantitative data to enhance interpretation. The Reach, Effectiveness, Adoption, Implementation and Maintenance evaluation framework was used to evaluate programme feasibility and sustainment potential. Participants were recruited from the Georgians Organized Against Lupus (GOAL) cohort (Georgia).
Results:
221 adults with SLE from the GOAL cohort enrolled in SELF, completing patient-reported assessments at baseline and 90-day follow-up. 12 participants also completed in-depth interviews exploring the impact of the programme. Certain subgroups including black participants (n=193; 95% CI=-1.59 to -0.04), those with high fatigue levels (n=164; 95% CI=-1.85 to -0.11) and participants living below 100% of the federal poverty level (n=74; 95% CI=-3.44 to -0.18) reported significantly lower disease activity at 90-day follow-up after engaging with SELF. High-fatigue participants improved on multiple measures while the low-fatigue group showed unexpected declines that may reflect baseline confounding. Qualitative findings generally supported quantitative results. One exception was self-efficacy in managing medications, which showed a small but significant decrease (mean reduction=-1.38, 95% CI=-2.50 to -0.26, Cohen's d=-0.14). However, qualitative data suggested participants became more aware of skill gaps rather than less capable.
Conclusions:
SELF showed promising results for reducing disease activity, pain and fatigue among specific subgroups of participants with SLE. Further research should broaden the evaluation of SELF to new geographical settings, broader populations (such as people living with lupus in rural healthcare settings) and further testing for cultural relevance across diverse racial and ethnic groups.
