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USC Center Testing Efficacy of Colorectal Cancer, Genetic Risk Education in Hispanic Community

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NEW YORK – Researchers at the University of Southern California want to assess how well members of the Hispanic community are learning about colorectal cancer and cancer genetics within an outreach program.

Toward this end, researchers are planning to conduct a randomized trial out of USC's Center for Optimization of Participant Engagement for Cancer Characterization (COPECC), which is part of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) network that's funded by the federal Cancer Moonshot Initiative. USC researchers expect to begin enrolling patients in the trial later this year after the protocol is approved by the university's institutional review board, said Mariana Stern, co-lead of the patient engagement unit within COPECC.

Stern added that the center was founded with the goal of gathering genomic data from Hispanic patients with colorectal cancer for research and developing a framework to engage this community in cancer studies, particularly genomics research.

"This is important because a lot of information we learn from cancer sequencing studies informs drug development and treatments, so if people are not represented, then we're basically treating people with therapies and drugs that were developed for White populations and treating everybody assuming they're the same when we know they aren't," she said.

Research has shown that cancer drug trials and cancer genomics research studies often do not enroll diverse participants. A 2021 study in JAMA Network Open found that across 93 precision oncology studies that included more than 5,800 patients, White participants were overrepresented in all of the trials. In this analysis, White non-Hispanic participants made up 82.3 percent of enrollees, while Black patients were 10 percent, Hispanic patients were 3.4 percent, and Asian participants were 4.1 percent.

In the USC trial, researchers led by Stern and Lourdes Baezconde-Garbanati, who heads the engagement optimization unit at COPECC, will enroll 140 participants of self-reported Hispanic or Latino descent who are not community health workers. Half of the participants will attend one educational session and receive materials on colorectal cancer and genetic risk of cancer and half will get standard informational materials but no educational session. Stern noted, though, that once the trial has ended, the half of participants who did not partake in educational sessions will have the chance to do so.

The trial will use educational materials developed within another COPECC program, called the Community Genetic Navigation Engagement Specialists training program, or CoGENES, which trains community health workers to talk about genetic research, clinical genetic testing, and genetic counseling for colorectal cancer so they can help educate local Hispanic communities about cancer risk and encourage greater participation in genetic research within these communities. Forty-two health workers who graduated from the CoGENES training program will lead the educational sessions in the USC trial.

The 45-minute sessions will be conducted entirely in Spanish, and educational materials will be available in both Spanish and English. In the Los Angeles communities where COPECC operates, many people are immigrants and monolingual Spanish speakers, Stern said, so giving them this information in Spanish is extremely important.

The CoGENES toolkit starts with a general overview of cancer and colorectal cancer, which contains basic information about cells and how cancer is an uncontrolled growth of cells. There is information about the prevalence of colorectal cancer in the overall and Hispanic/Latino population, on healthy lifestyles, and how to reduce the risk of cancer through lifestyle adjustments, for example, by reducing alcohol or processed meat consumption and stopping smoking.

The toolkit covers the symptoms of colorectal cancer, how it is detected, and common medical terms that come up during the testing process. It then provides a primer on inherited genetic risk for colorectal cancer and mutations associated with colorectal cancer, which Stern said can be a difficult topic to understand for many people.

"This is probably the hardest part to provide training on because these are complex concepts," Stern said. She noted that even the word choice in this portion of the training can be confusing to some people. When training community health workers within the CoGENES program, she recalled that some participants were confused by the use of the words "inherit" or "inheritance" when talking about genes. "When they think of inheritance, they think of money," she explained. "The idea that you inherit genetic traits for some of them was new."

It is not a given that everyone in the community has attended high school or college, where they may have gotten introduced to basic genetics concepts, she said. Baezconde-Garbanati added that having an interactive component that allows participants to visualize DNA and genetic inheritance helps improve understanding.

"Not only do they hear the information, they also see the information, and they touch the information," Baezconde-Garbanati said. "Every aspect of learning is engaged in the training, and that also helps understanding, especially when you have low literacy populations that are not used to these incredibly complex concepts that we’re trying to convey."

Within the Latino community, talking about health among families is not very common, Stern added. As such, the training emphasizes the importance of collecting information from family members' health or recording how relatives died. They emphasize the importance of knowing whether there's a history of cancer in one's family and gathering details about what type of cancer relatives had and what age they were diagnosed.

"Once you prompt them, they do start collecting their information, so we put a lot of attention on that," Stern said. "Then, we talk about the importance of seeking counseling with a genetic counselor and potentially [getting genetic] testing if they have a lot of cancer in their family and why that's important, how that can save lives, because then other family members can benefit from that testing result."

Researchers will measure the efficacy of the training materials using participant surveys before and after the program. The surveys will include questions that gauge the participants' knowledge and if they have or plan to get screened for colorectal cancer. Participants will have to answer the same survey questions before and after the program, so researchers can measure the efficacy of the educational materials and session. Participants in the control arm, who don't sit in on the educational talks but only get informational materials will also be surveyed on their knowledge of colorectal cancer, cancer genetic risk, and lifestyle changes to prevent cancer.

The surveys will also include questions about participants' lifestyle, such as exercise habits and consumption of alcohol and processed meat. The initial survey will give the participants a prevention score based on answers to the lifestyle questions, Stern said. That score will be compared to their score in the survey after they attend one educational session to see if they made any changes to their lifestyle to help reduce cancer risk.

The results from these evaluations will provide researchers insight into whether the education intervention can improve knowledge. If the trial shows that it can, Stern and Baezconde-Garbanati said the training and educational materials could become a model for other cancer centers to use to reach out to and educate their local Hispanic communities.

COPECC is part of the national PE-CGS network that includes five patient engagement programs focused on cancer and genetics for underserved communities. Additional projects funded through this network include the Broad Institute and Dana-Farber Cancer Institute's Count Me In project focused on characterizing rare sarcomas; a program focused on advancing cancer genomics research within the American Indians of Southwestern tribal nations spearheaded by the Mayo Clinic, University of New Mexico Comprehensive Cancer Center, City of Hope, Black Hills Center for American Indian Health, and the Translational Genome Research Institute; and other programs at Yale University and Washington University in St. Louis.

Baezconde-Garbanati noted that there's already been some interest from other centers in the network about implementing their own version of this program and that USC has the ability to use the PE-CGS network to scale the program.

"Once we go through this process, we can hopefully show that this program works in increasing knowledge, increasing the likelihood of people getting screened [for colorectal cancer] and the likelihood that people will ask their families about their cancer history, and if they do have family history, that they will be more likely to see a genetic counselor," Stern said. "If [the trial shows that] the program works, then we can package it and make it available for anybody to adapt it to use across the country or even in Latin America."

Baezconde-Garbanati people who have been part of the CoGENES program have shown that they want to share this information with their community. One participant who received training from a CoGENES instructor shared what he learned on his local radio show, she highlighted.

"He was able to reach 1.6 million people," Baezconde-Garbanati said. "The final phase is dissemination. We're working closely with the community workers that were trained originally [within CoGENES], as well as our community outreach people within our cancer center, to get the word out."

Another participant in the program organizes meetings in a local park on weekends to bring people from the community together and educate them about cancer using materials from the CoGENES program, Stern added.

"The impression I got is that people were hungry … to get this knowledge and then they were rushing to disseminate it everywhere," Stern said. "Sometimes there's not enough effort made to disseminate these complex concepts about cancer in a friendly manner to our communities. Maybe there's the assumption that they don't want to know about this, but they're really hungry to know."