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Systemic lupus erythematosus (SLE) is more prevalent among Hispanic women than white women, according to two recent studies published in Arthritis & Rheumatology.1,2 However, Latinas often lack awareness of lupus, which can contribute to delays in diagnosis and treatment, and lead to worse outcomes.
“One of the challenges is reaching out to the Latino community, because many have language and access barriers. We need to implement programs that will overcome these barriers and that have cultural relevance, including messages that will resonate with these particular patients, incorporating the challenges they face with getting a lupus diagnosis and care,” says Cristina M. Drenkard, MD, PhD, an Atlanta rheumatologist and associate professor of epidemiology at the Emory School of Medicine. “Because I’m also a Latina, I’m very interested in programs targeting the Latino community.”
Dr. Drenkard serves on the ACR’s CDC Grant Steering Committee, which provides guidance to projects funded by the Centers for Disease Control and Prevention (CDC). These projects aim to raise lupus awareness and skills among individuals and healthcare providers to improve the diagnosis and treatment of lupus. The Promotores Project, which launched three years ago, is one of these programs.
Community Health Workers
Promotores de salud, also called promotoras, are recognized lay health workers in the Latino/Hispanic community.3 These community health workers are usually women and are trusted by their clients, who may be family members, friends or neighbors. They promote awareness of health issues among fellow Latinas and help clients find health resources. The ACR’s Promotores Project is part of its Collaborative Initiatives (COIN).
Six programs have been held so far in Florida, Georgia, Texas and California. Community health workers attending these sessions learn more about SLE signs and symptoms, high-risk groups, diagnosis, where to find a rheumatologist, treatment options and the importance of seeing a provider if symptoms arise. Programs include role playing to give them practice in communicating SLE information and responding to common client questions or concerns.
Dr. Drenkard reviewed the program curriculum, which was created in part by Venus Ginés, founder of Dia de la Mujer Latina, a Texas-based organization providing education and outreach to promote healthy behaviors in the Latino community.
Ms. Ginés, who has lupus, has led several of the training sessions and serves on the Promotores Project’s Advisory Committee. “I’ve been very vocal about the fact that there is very little research on Latinas with lupus,” she says. She was diagnosed with lupus shortly after she was diagnosed with breast cancer while working as a flight attendant. “My joints were hurting. I had horrible headaches. I thought it was all related. It’s important for a doctor, when you have a patient in front of you, to ask the crucial questions.”
Spanish & English Materials
Community health workers receive a toolkit to share with clients who may be at risk for lupus, says Robin Campbell, senior specialist and project manager of COIN. Patients may then talk to their primary care providers armed with more knowledge of SLE, “and they can be taken more seriously. This project utilizes the strength of the community health workers, who are trusted by their clients, to provide reliable health information. They speak the language and understand the culture,” she says.
The ACR is enhancing the program’s curriculum and creating a facilitator’s guide with up-to-date lupus information. Materials will be available in Spanish and English.
Ms. Ginés, whose graduate studies at Georgia State University focused on cultural and health barriers faced by Latinas, feels that many women in her community may ignore their symptoms because they are unaware of SLE.
“They may think, ‘This is something I just have to go through and live with,’” or draw from cultural traditions and try to take care of their disease with natural treatments, she says. She started a similar community health program in Atlanta in 1997 and moved to Houston in 2008, where she earned her credentials to train and certify community health workers in Texas.
This program’s goal is to motivate, inform, navigate and educate clients about health, she says. “I was promoting crucial services to navigate people through the health system for treatment of diabetes, HIV, breast cancer. I thought, why not lupus?”
She worked with the ACR’s CDC Grant Advisory Committee to create the lupus education curriculum aimed at fellow community health workers, which was evaluated and tested in focus groups throughout Texas. Some attendees at the sessions receive credits to help them maintain their states’ certifications.
Trust & the Health System
Latinos often mistrust the American medical system (e.g., due to a preference for natural remedies or, for some, their immigration status), so community health workers help navigate them through the process and reduce their stress, says Ms. Ginés.
“The impact of what we do in the community is crucial to make sure that people at risk for lupus are getting screened. No one in the Latino community really knew about lupus. They didn’t realize there was a name given to these symptoms. Once they say, ‘Okay, I have lupus,’ [they ask] ‘what do I do now?’” she says. “In our curriculum, we talk about how to communicate the right messages about lupus, how not to scare people and how to help clients talk about their disease with their families. People are concerned that their doctors are going to do all these tests. They may not understand why all these tests are crucial for diagnosis. These feelings are worse when someone really doesn’t understand the healthcare system.”
Lack of awareness of lupus among Latinos has a negative impact on disease outcomes, says Dr. Drenkard.
“This program also emphasizes lupus nephritis, a disease manifestation that disproportionately strikes Latinos and can lead to chronic renal failure and other poor outcomes, particularly when there are delays in its diagnosis and treatment,” she says. “The program also tackles lupus medications and healthy behaviors. Lupus is a very challenging disease. A patient may not have symptoms all the time, but then have a flare. In the Latino community, they may think they don’t need to take treatments when they’re not symptomatic and don’t want to take them due to the side effects.”
The program teaches community health workers how to explain the need for therapy even when SLE is asymptomatic, she says. The ACR provides them with lupus education and practical skills to raise awareness and help navigate their clients, who trust them, to a rheumatologist for diagnosis and therapy.
“We are trying to bring the community back into the equation,” says Ms. Ginés. “We are providing the community health workers the training and information they need.”
For more information on the Promotores Project and the ACR’s Collaborative Initiatives, send an email to [email protected].
Susan Bernstein is a freelance medical journalist based in Atlanta.
References
- Dall’Era M, Cisternas MG, Snipes K, et al. The incidence and prevalence of systemic lupus erythematosus in San Francisco County, California: The California lupus surveillance program. Arthritis Rheumatol. 2017 Oct;69(10):1996–2005.
- Izmirly PM, Wan I, Sahl S, et al. The incidence and prevalence of systemic lupus erythematosus in New York County (Manhattan), New York: The Manhattan lupus surveillance program. Arthritis Rheumatol. 2017 Oct;69(10):2006–2017.
- Centers for Disease Control and Prevention. Promotores de salud/community health workers. 2018 Aug 27.