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LUPUS ONLINE AWARENESS AND EDUCATION CAMPAIGN TESTS WELL AMONG YOUNG, AT-RISK AFRICAN-AMERICAN AND LATINO WOMEN
Newswise — CHICAGO – Using a culturally competent, well-designed online resource helps increase awareness of systemic lupus erythematosus (SLE) and its symptoms in at-risk patient populations, according to new research findings presented this week at the 2018 ACR/ARHP Annual Meeting (Abstract #280).
SLE, also called lupus, is a chronic disease that causes systemic inflammation that affects multiple organs. Lupus is far more common in women than men, and requires careful management during pregnancy. It is also more prevalent among African-Americans and Latinos than non-Hispanic whites.
Patients often face significantly delayed diagnosis and the disease is often misdiagnosed. In an effort to reduce time-to-diagnosis among women in minority populations at highest risk for developing lupus, the American College of Rheumatology and the Lupus Foundation of America created and tested a digital awareness campaign, Be Fierce. Take Control, designed for African-American and Latino women ages 18-25 who may be experiencing lupus symptoms. The goal of the program is to raise their awareness of the disease and provide evidence-based information on what to do next.
“For this campaign to be effective, we needed to understand where our audience was finding their information, and what messages would drive them to take action,” said R. Paola Daly, MPH, Director of Research at the Lupus Foundation of America and the lead author of the study.
“There is a clear need to address the health disparity in lupus and raise awareness about the disease. We know that over half of Americans have either not heard about lupus or know little or nothing about it beyond its name,” said Karin Tse, Health Outcomes and Research Coordinator at the Lupus Foundation of America, and the study’s co-author. “Lupus can be disabling and sometimes fatal, especially in minority populations who are more likely to develop lupus at a younger age and experience more serious complications. This campaign is an important step in reaching those who might not be thinking about lupus.”
The developers of Be Fierce. Take Control conducted research via web-based focus groups of 60 women in the intended audience. The study’s goal was to gather information on health- and information-seeking behaviors, participants’ attitude toward health care, and response to potential campaign messages. The information gathered from the focus groups guided the messaging and development of the campaign, which included paid media partnerships with WebMD and A Plus media, digital advertising, partnership outreach, videos and a campaign website. The campaign’s creative elements were then tested for cultural relevancy, health literacy, scientific accuracy and general appeal. Testing included user panels, and a rigorous review and approval process by two lupus clinician/researchers. The campaign launched in June 2017. After one year, user testing was conducted with 10 users in the intended audience, who were asked to provide detailed feedback on how they navigated the campaign in order to improve the viewer experience.
“We learned through our research and testing that this audience was seeking health information online and often ignoring potential symptoms of lupus,” said Daly. “This guided our digital-only approach to the campaign and symptom-first messaging, instead of the traditional approach of leading with facts about lupus.”
The Be Fierce. Take Control website received 114,866 page views in its first year. Most visitors read the home page, followed by a page providing reliable resources for next steps to take if lupus symptoms were suspected. In addition, 72 percent of visitors responding to a helpfulness poll on each page indicated that the content was helpful. A series of lupus-focused articles were also released through a paid media partnership in 2017, and these received 345,145 views in the first three months. The partnership also included a YouTube video featuring the New York Sharks women’s football team with a message for women to take control of their health. This video generated more than two million views.
Post-launch user testing showed that nine out of 10 users could describe lupus as an autoimmune disease after reviewing the site. Seven out of 10 users reported that they had a better understanding of lupus and would be comfortable approaching a doctor to discuss their lupus symptoms. In May 2018, an updated website was released based on these results.
The study’s findings show that Be Fierce. Take Control is an example of a well-designed, culturally competent online resource to increase awareness and knowledge of lupus and its symptoms in young African-American and Latino women who may be experiencing lupus symptoms. It also highlights the importance of rigorous testing to ensure cultural relevance in lupus education materials.
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About the ACR/ARHP Annual Meeting
The ACR/ARHP Annual Meeting is the premier meeting in rheumatology. With more than 450 sessions and thousands of abstracts, if offers a superior combination of basic science, clinical science, tech-med courses, career enhancement education and interactive discussions on improving patient care. For more information about the meeting, visit https://www.rheumatology.org/Annual-Meeting, or join the conversation on Twitter by following the official #ACR18 hashtag.
About the American College of Rheumatology
The American College of Rheumatology is an international medical society representing over 9,400 rheumatologists and rheumatology health professionals with a mission to empower rheumatology professionals to excel in their specialty. In doing so, the ACR offers education, research, advocacy and practice management support to help its members continue their innovative work and provide quality patient care. Rheumatologists are experts in the diagnosis, management and treatment of more than 100 different types of arthritis and rheumatic diseases. For more information, visit www.rheumatology.org
Abstract #: 280
Be Fierce. Take Control.TM an Evidence-Based Digital Lupus Awareness and Education Campaign for Young Minority Women at Risk for Lupus
- Paola Daly1, Nicole Wanty2, Maggie Maloney1, Stacey Boyd3, Karin Tse1 and Karen Goldstein4, 1Lupus Foundation of America, Washington, DC, 2KDH Research & Communication, Atlanta, GA, 3American College of Rheumatology, Atlanta, GA, 4Ogilvy, Washington, DC
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.
Disclosures: R. P. Daly, Lupus Foundation of America, 3 N. Wanty, KDH Research and Communication, 3 M. Maloney, Lupus Foundation of America, 3, Centers for Disease Control and Prevention, 2 S. Boyd, American College of Rheumatology, 3, Centers for Disease Control and Prevention, 2 K. Tse, Lupus Foundation of America, 3 K. Goldstein, Ogilvy, 3
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