‘Our community is suffering’: Study aims to identify needs of Latino cancer survivors
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By 2023, there will be about 4 million Latino cancer survivors in the United States, representing approximately one-fifth of the survivorship population.
Despite this fact — according to a presenter at the Cancer Center Survivorship Research Forum — very few studies have been funded around prevention or survivorship within the Latino population.
“Our community is suffering,” Amelie G. Ramirez, DrPh, MPH, director of the Institute for Health Promotion Research, chair of the department for population health sciences and associate director of cancer outreach and engagement at Mays Cancer Center at UT Health San Antonio, told Healio. “Latino cancer survivors are more likely to have lower education, less access to insurance and no source of primary care. They’re also more likely to be underinsured, which means they’ll be diagnosed with late-stage cancers. So, it’s an extreme concern to us.”
The Avanzando Caminos study
To improve understanding and representation of the Latino cancer survivor population, Ramirez and Frank J. Penedo, PhD, associate director of cancer survivorship and behavioral translational sciences and director of the cancer survivorship program at University of Miami's Sylvester Comprehensive Cancer Center, launched a national cohort study designed to investigate the impact of social, cultural, behavioral, psychological and medical factors on post-cancer life in Latino cancer survivors.
The study, which is called “Avanzando Caminos (Leading Pathways): The Hispanic/Latino Cancer Survivorship Study,” is funded by a 6-year, $9.8 million NCI grant and will recruit 3,000 Latino cancer survivors.
“This is also the first study to look at the diversity of different Latino groups — 50% will be recruited from Texas, a predominantly Mexican-American population, and the other 50% will be recruited from the Miami area and represent other groups, such as Cubans, Puerto Ricans, and Central and South Americans,” Ramirez said.
The study will examine the multiple determinants of symptom burden on disease, as well as the psychosocial issues that impact survivorship. Additionally, the study will evaluate the biological differences in cancer genetic risk, aggressiveness and treatment response among diverse groups of Latino individuals.
“The Latino population represents a whole spectrum of the community — from European to Native American to Afro-Caribbean, and everything in between,” Ramirez said. “Yet our community doesn’t participate in clinical trials, so we just don’t have good data and treatment models designed for our community.”
Identifying eligible participants
Ramirez noted that one surprising challenge she and her colleagues faced in developing the study involved finding eligible participants.
“Most groups can go and search the electronic databases and find good racial and ethnic data, but when you’re trying to find your Latino population, it’s difficult, because they might be miscoded in the records or there’s not enough information filled out,” she said. “What we found is that in 12% of our population, the medical records said they had cancer, but they didn’t.”
Ramirez said survivors of breast cancer could be relatively easy to identify and enroll in the study, but patients with other cancers — including stomach cancer and lung cancer — could be more challenging.
“Maybe because of the later diagnosis of these cancers, these individuals were less likely to participate and harder to identify,” she said. “In the end, though, our respondents were very grateful.”
Ramirez cited some of the appreciative responses from participants, including “You’re the first people who have asked me about what I went through and actually listened to what I have to say,” and “It’s an honor to use my cancer story to give back to others.”
“One respondent said, ‘For a long time, I asked God why I was diagnosed with cancer?,’” Ramirez added. “They said now, they feel like they have a purpose — to share their story, and help others have a better experience.”
Listening and accommodating
Ramirez said when discussing possible clinical trial participation with a patient with cancer or a survivor, oncologists should remember that, often, these decisions are made jointly with the patient’s family.
“We need to be a bit more patient and willing to hear the voice of the patient and their family members, and help them decide whether they want to participate in a study,” she said. “Sometimes this is a family decision.”
Additionally, Ramirez said even in cases where an individual is insured, there may be challenges in terms of transportation or getting time off from work.
“These patients may have two jobs, so they can’t come during normal work times,” she said. “Accommodating and being available on weekends is very important.”
Potential language barriers are another challenge clinicians should be aware of, Ramirez noted.
“When you have a major health problem, you tend to rely on your native language,” she said. “Being able to have access to bilingual providers or support staff is really important.”
Ramirez pointed out that many studies ask for a good deal of time and commitment from participants and should be reimbursed at the minimum wage per hour, at least.
“NIH budgets have not increased in years, so we’re trying to conduct studies on limited budgets with the type of team we need,” she said. “We need to begin looking at how much we can ask of our participants.”
To further delve into the important issue of cancer research in the Latino population, UT Health San Antonio will be hosting a conference called Advancing the Science of Cancer in Latinos in February 2024.
“It’s a biannual conference that unites physicians, researchers and advocates from across the U.S. and internationally,” Ramirez said. “It’s purpose is to discuss and learn about the latest cancer research in this population.”
References:
- Advancing the Science of Cancer in Latinos 2024. Available at: https://uthscsa.edu/medicine/education/cme/conferences/ascl.
- New $9.8 million study is 1st to seek full understanding of the Latino cancer survivorship journey (press release). Available at: https://salud-america.org/new-9-8-million-study-is-1st-to-seek-full-understanding-of-the-latino-cancer-survivorship-journey/. Posted May 3, 2021. Accessed Sept. 12, 2023.
- Ramirez A. Latinx populations and survivorship care. Presented at: Cancer Center Survivorship Research Forum; Sept. 11-12, 2023, Stanford, California.
For more information:
Amelie G. Ramirez, DrPH, MPH, can be reached at UT Health San Antonio, 7703 Floyd Curl Drive, San Antonio, TX 78229; email: ramirezag@uthscsa.edu.
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Ramirez AG. Latinx populations and survivorship care. Presented at: Cancer Center Survivorship Research Forum; Sept. 11-12, 2023, Stanford, California.
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