Online resource help increase awareness in at-risk patient populations, according to results from a new study presented by the researchers at the 2018 annual meeting of the American College of Rheumatology/ Association of Rheumatology Health Professionals.
Systemic lupus erythematosus (SLE), or lupus, is a chronic disease that causes systemic inflammation and affects multiple organs. The condition is far more common in women than in men, and it is more prevalent among African-Americans and Latinos than non-Hispanic whites. Furthermore, the disease is often diagnosed late or misdiagnosed, and it requires careful management during pregnancy.
In an effort to raise awareness of the disease among minority women at high risk and reduce time to diagnosis, 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.
“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,” said Karin Tse of the Lupus Foundation of America. “This campaign is an important step in reaching those who might not be thinking about lupus.”
To develop the awareness campaign, the research team conducted web-based focus groups of 60 women in the intended audience. They gathered information on health- and information-seeking behaviors, participants’ attitudes toward health care, and responses to potential messages. They used the information from the focus groups to develop the campaign, which included paid media partnerships with WebMD and A Plus media, digital advertising, partnership outreach, videos, and a campaign website. The team then engaged user panels and two lupus clinician-researchers to test the campaign’s creative elements for cultural relevancy, health literacy, scientific accuracy, and general appeal.
The campaign launched in June 2017, and the website received 114,866 page views in its first year. Most visitors read the home page and a subsequent page that outlined evidence-based next steps when lupus was suspected. A series of lupus-focused articles received 345,145 views in the first three months. In addition, a YouTube video featuring the New York Sharks women’s football team generated more than 2 million views.
Testing after website launch revealed that nine of ten users could describe lupus as an autoimmune disease, and seven of ten users reported that they had a better understanding of lupus and would be comfortable approaching a doctor to discuss lupus symptoms.