Background/Purpose: Comprehensive lupus education is essential for increasing awareness, early diagnosis and management of lupus due to the disease’s heterogenous nature. The Lupus Foundation of America (LFA) recognizes the importance of disease education through its virtual Lupus & You: Answers. Advocacy. Action. (L&Y) Program, which expands upon in-person education that was offered prior to the COVID-19 pandemic. L&Y is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and disease management. A review of registration data was conducted to analyze registration characteristics and determine the reach of the program.

Methods: L&Y registration data is collected through a form on the LFA’s event page. The registration form captures demographic data such as sex, geographical location and lupus connection. Registration data from program inception in 2021 to 2024 was reviewed to assess quantitative trends. 

Results: A total of 16 events were conducted, reaching a total of 20,558 registrants in the span of 4 years. Data demonstrates that registration varies greatly by topic (Figure 1) and that the average registration is 1,285. The most popular topics of interest based on registration include (1) Pain and Stress Management, (2) Environmental Triggers and Flares, and (3) Hair Loss, Skin Rashes and Self-Image. Findings show that 93% of registrants (n = 19,133) are US based and that registrations increased every year except for a decrease in Year 3 (Table 1). Excluding Year 3, registration increased by 12% from Year 2 to Year 4. Table 2 illustrates the registrants’ connection to lupus by year. Most registrants, 85% (n = 17,154), indicated that their connection to lupus is that they have the disease. Other top connections to lupus include registrants who might have lupus, have a family member with lupus, or are healthcare professionals.

Conclusion: There is an ongoing need to provide virtual educational opportunities for people with lupus and others with a connection to the disease including family members, friends and healthcare professionals. The L&Y program continues to grow annually with increasing registration rates except for one year. The decrease in registration during Year 3 may be attributed to a Spanish language only program. Increasing registration demonstrates that there is an ongoing need for virtual education, however, topic selection is instrumental in reaching the patient community.

Figure1. Number of Registrants by Topic

Table 1. Registrations by Location

Table 2. Connection to Lupus by Year

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/assessing-the-reach-of-a-virtual-education-program-lupus-you-answers-advocacy-action/