'Culturally Competent' Online Resource Raises Lupus Awareness in At-risk Populations
CHICAGO — A “culturally competent” and well-designed online resource, called “Be Fierce. Take Control,” was successful in raising awareness of systemic lupus erythematosus among at-risk populations, including young black and Latina women, according to data presented at the ACR/ARHP 2018 Annual Meeting by R. Paola Daly, MPH, of the Lupus Foundation of America.
To raise lupus awareness, and reduce the time to diagnosis among women in minority populations at highest risk for the disease, the American College of Rheumatology and the Lupus Foundation of American partnered to create “Be Fierce. Take Control.” According to Daly, the digital awareness campaign was specifically designed to inform black and Latina women aged 18 to 25 years who may be experiencing lupus symptoms.
“This campaign is meant for women who have symptoms that could be lupus but lack a diagnosis,” Daly told Healio Rheumatology. “We wanted to address the problem that there are pervasive symptoms often attached to lupus, but these symptoms are sometimes vague and could be attributed to other diseases. Symptoms such as pain, joint pain and fatigue could be a result of many other diseases, but they could also be lupus when paired with other symptoms.”
She noted, “We know that most patients who are eventually diagnosed with lupus do present with these types of symptoms, so we wanted to provide an outlet for women experiencing these symptoms to give them information, specifically about lupus.”
In designing the campaign, its developers conducted web-based focus groups of 60 women representing their intended audience. They obtained information on participants’ health- and information-seeking behaviors, their attitudes toward health care and their responses to potential campaign messages.
The campaign also included paid media partnerships with WebMD and A Plus media, digital advertising, partnership outreach, videos and a website. To test the resource for cultural relevancy, scientific accuracy and general appeal, 10 users in the intended audience were asked to provide feedback, and the designers convened a review process conducted by two lupus clinician researchers.
“Be Fierce. Take Control” launched in June 2017. According to Daly, the campaign website received 114,866 pageviews in its first year, with most visitors reading the home page, followed by a page providing information on what to do if they suspect they have lupus symptoms. In addition, 72% of visitors who responded to a helpfulness poll on each page indicated that the content was helpful.
“The campaign essentially takes the patient through several behavioral steps to seek help if it is appropriate, walks the patient through common questions, such as ‘what is lupus?’ and ‘what are lupus symptoms?’ then offers instruction for what patients experiencing these symptoms should do next,” Daly said.
A series of lupus-focused articles, released through a paid media partnership in 2017, received 345,145 views in the first 3 months. A partnered YouTube video featuring the New York Sharks women’s football team, with a message for women to take control of their health, attracted more than 2 million views.
Daly noted that the post-launch testing showed that nine out of 10 users could describe lupus as an autoimmune disease after reviewing the site. In addition, seven out of 10 users reported that they had a better understanding of lupus and would be comfortable approaching a doctor to discuss their symptoms. In May 2018, the campaign’s designers updated the website based on these results.
“I think this campaign is a great place to start for patients, and for rheumatologists and primary care providers, an opportunity to potentially connect with other resources that these women can use to take the next appropriate step to seek care and get a diagnosis faster,” Daly said. – by Jason Laday
Daly RP. Abstract 280. Presented at ACR/ARHP Annual Meeting, Oct. 20-24, 2018; Chicago.
Disclosure: Daly reports being director of research for the Lupus Foundation of America.