Background/Purpose:

Lupus is a complex, chronic autoimmune disease that has significantly higher prevalence and incidence among minority women.[i] In an effort to reduce the time to diagnosis for populations with highest risk, ACR and the Lupus Foundation of America created a digital awareness and education campaign, Be Fierce. Take Control., intended for African American and Latino women ages 18-25 who may be experiencing lupus symptoms to raise their awareness of lupus and provide evidence-based information on what to do next.

Methods:

Formative research was conducted via web-based focus groups with 60 individuals meeting intended audience criteria to gather information on help and information seeking behavior, attitudes towards health care, and appropriateness of culturally relevant language. Using this information, a digital campaign involving mobile ads, videos and articles all directing to a campaign website was developed and tested for cultural relevancy, health literacy, scientific accuracy, and general appeal. Testing was completed using user panels, as well as a rigorous review and approval process by two lupus clinician/researchers. Campaign assets were finalized using feedback, and the campaign was launched in June 2017. Following the first year of launch, user testing was conducted with 10 individuals in the intended audience to provide detailed information on how users navigated the campaign website in order to improve user experience.

Results:

The website received a total 114,866 page views in the first year. The majority of visitors read the home page, followed by a page providing reliable resources of next steps to take if lupus symptoms are suspected. 72% of visitors who responded to a helpfulness poll present on each page indicated that the web-content was helpful. User testing post-launch revealed 9 out of 10 users could describe lupus as an autoimmune disease after reviewing the site, and 7 out of 10 users had a better understanding of lupus and would be comfortable enough to approach a doctor about potential lupus symptoms. New updates were released in May 2018 based on these results. In addition, a series of lupus articles were released through a paid media partnership with A Plus media, receiving 345,145 views in the first three months. The partnership also included development and promotion of a video featuring NY Sharks women’s football team, depicting the theme of being fierce in their lives with an underlying message on taking control of your health. The video gained attention from celebrity influencers, generating over 2 million views with nearly a third of its YouTube viewers watching the entire video.

Conclusion:

Be Fierce. Take Control. provides an example of a well-designed, culturally competent online resource to increase awareness and knowledge of lupus symptoms in African American and Latino women ages 18-25 who may be experiencing lupus symptoms. This is the first digital-only lupus campaign targeted to this audience, highlighting the importance of rigorous testing to ensure cultural relevance in health communication campaigns.

[i] Centers for Disease Control and Prevention. Lupus Detailed Fact Sheet. https://www.cdc.gov/lupus/facts/detailed.html. Published May 3, 2018. Accessed June 1, 2018.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/be-fierce-take-control-tm-an-evidence-based-digital-lupus-awareness-and-education-campaign-for-young-minority-women-at-risk-for-lupus/