An end to disparities
African-American men are significantly more likely to die from oral cancer than white men. The question is why and what can be done to stop it? UF’s Southeast Center for Research to Reduce Disparities in Oral Health is dedicated to finding these answers and putting an end to inequalities in health care.
By Kathryn Stolarz
Belinda Quarterman spent her summer knocking on doors — 140 of them to be precise. In the heat of Florida’s summer sun, she roamed the rural neighborhoods of Alachua, High Springs, Worthington Springs and Lake Butler to ask African-Americans questions about their oral health.
Quarterman was working as a surveyor for the Southeast Center for Research to Reduce Disparities in Oral Health. The survey sought to discover what keeps rural, minority and low-income people from getting screened for mouth and throat cancer.
According to recent data from the National Institutes of Health, even though Caucasians are more likely to get oral cancer, African-Americans are more likely to die from it. About 61 percent of white men diagnosed with oral cancer are alive five years later, but only 36 percent of black men are, National Cancer Institute statistics show. There’s something wrong with that picture, experts say.
“Here is a highly curable cancer, and it’s killing a disproportionate amount of African-Americans,” says James Shepperd, Ph.D., the survey’s principal investigator and a psychology professor in UF’s College of Liberal Arts and Science.
The survey results affirmed just what researchers speculated — the need to increase awareness and screening among these populations.
“Some of the people hadn’t even heard of mouth or throat cancer,” Quarterman says.
Head and neck cancer includes cancer of the nose, lips, mouth, salivary glands, throat or larynx. It’s among the top five most common cancers among black men in the U.S., according to the National Cancer Institute. Tobacco and alcohol use are the most significant risk factors, and 85 percent of oral cancers are linked to tobacco use. Other possible risk factors include sun exposure, human papillomavirus infection, radiation exposure and poor oral hygiene.
About 82 percent of people survive oral cancer when it’s caught early, statistics show. But most cases are not caught soon enough — about half are found after the disease has spread to lymph nodes and surrounding organs, and only about half of those diagnosed then survive past five years. The numbers get even worse for people diagnosed after the disease has spread to more distant organs.
The Southeast Center for Research to Reduce Disparities in Oral Health was established in October 2008 when College of Dentistry researcher Henrietta Logan, Ph.D., received a $5.3 million grant from the National Institutes of Health to fund community-based research and educate low-income, rural and minority citizens about head and neck cancer. The center’s goal is to increase detection and prevention of oral cancer among such populations. In its three years of existence, the center has become a magnet for investigators and a gold mine for related projects looking to address disparities in oral health.
The center reached a milestone in April when the state of Florida and UF recognized it as an official research center, a move that will help expand collaboration across different areas of health care.
“This creates a higher profile for their activities but also encourages collaboration,” said Teresa Dolan, D.D.S., dean of the College of Dentistry. “By having researchers collaborate from a variety of disciplines, it will increase the likelihood of us finding a better understanding of what causes head and neck cancer and how to prevent the disease.”
A call to action
Prior to the center’s work, little was known about the best ways to reach out to rural and minority communities, Shepperd says. Having surveyed members of these communities about why they don’t get oral cancer screenings, he believes he can use the data to break down barriers.
A simple, five-minute examination is all it takes to detect a possible problem, Shepperd says. During a screening, the screener looks for and asks about common oral cancer symptoms, such as a lump, a continually sore throat, difficulty swallowing and a change in or hoarseness in voice. If cancer is suspected, patients are sent for further tests to determine if they have cancer.
Shepperd said there were three main reasons people said they hadn’t gotten screened: They had never heard of oral cancer or didn’t think it was important; they didn’t want to know if they had oral cancer; and they lacked resources, such as time and transportation, to get screened.
He plans to create persuasive messages that encourage people to get checked by tackling the barriers to screening.
Shepperd hopes to increase awareness by recruiting community leaders to display messages on car magnets, and also to display messages on billboards and posters.
The center also aims to recruit community leaders to serve as role models to inspire others to get screened. Virginia Dodd, Ph.D., a primary investigator on one of the center’s studies, formed a community advisory committee of about a dozen people in Gadsden County, including church leaders, business owners, a cancer nurse and a radio personality, to help spread the word. Dodd is an assistant professor of health, education and behavior in UF’s College of Health and Human Performance.
“If we can learn how to produce messages that are meaningful, relevant and a call to action, I believe we can be effective,” says Logan, a professor of community dentistry and behavioral sciences and the primary investigator on the grant that established the center.
Sometimes a key to reaching people can be as simple as changing the way things are described, like telling patients to get checked or examined for oral cancer instead of getting screened, Logan says. To many people, screening means the wire mesh that covers their windows, not a check for cancer.
Making an impact
Beyond Shepperd and Dodd’s groundbreaking work, the center funded a study by Joseph Riley III, Ph.D., an assistant professor of community dentistry and behavioral science in UF’s College of Dentistry. Riley carried out a rural media campaign that promoted oral cancer screenings, also funded by an NIH grant.
The center’s researchers have already involved more than 3,400 community members in research and produced about 30 publications, posters, abstracts and presentations. Five distinguished members also have spoken at faculty and graduate student assemblies.
The center has been able to accomplish so much because it offers its researchers valuable resources, Shepperd says. Experts are available to help with planning and submitting grants; budgeting and monitoring research and reporting progress; a community liaison connects investigators to research participants; and the center has a close relationship with the NIH’s National Institute of Dental and Craniofacial Research.
Beyond its research accomplishments, Logan said she and her team are proud of the positive effect the center has had on the community. The center has a thriving community advisory board that seeks input from numerous community leaders, from church leaders to politicians.
The center has provided $300,000 to participating communities throughout North Central Florida by creating local jobs, giving incentives to research participants and compensating local vendors. Through a collaboration with the College of Dentistry, about 40 UF dental students have been trained to perform free head and neck cancer screenings for rural communities in North Florida, and the center has participated in about 100 area health fairs.
At the August community advisory board meeting, member Cynthia Moore Chestnut told Logan, “You have really built communication with the community and you have listened and you have empowered.”
In Bradford County, community advisory board member Ross Chandler led several satellite community meetings to find out more about people’s concerns and why they don’t get screened for the disease. He said some of the obstacles community members voiced were a lack of trust, a lack of insurance, a fear of finding out something is wrong with them and a lack of funds to pay medical bills.
”It has brought a tremendous amount of awareness about mouth and throat cancer. It’s brought a tremendous level of understanding about it,” Chandler says. “Because of that awareness, many of the people here have been able to communicate their frustrations with health care services and the lack thereof and why many African-Americans don’t seek medical help and are afraid of going to the doctors.”
Although it’s based out of Gainesville, the center involves satellite clinics and rural communities throughout the state and has branched into dozens of projects geared toward reducing disparities.
For example, researchers have established a saliva bank that has already collected about 75 samples and supplemental health data about subjects that will help predict health disparities.
The center is also participating in a five-year, $1 million Health Resources and Services Administration-funded project interviewing low-income and minority adolescent boys to identify what promotes risky behavior and what keeps them from seeking dental and medical care.
Research assistant Cameron Brown began surveying participants and found finances and transportation to be commonly mentioned barriers to regular dental and medical care.
“There’s a lot of important research coming out of the center that will benefit Gainesville, Fla., and the U.S. in general,” Brown says.
On Sept. 17, the center will take part in a health fair in Starke, doing screenings and helping spread the word about oral cancer. It’s the type of thing they do regularly. For many of the people the center is trying to reach, folks who have limited access to physicians and limited funds to pay, these screenings can literally be a lifesaver.
“Knowledge is power,” says Cynthia Agyemang, the center’s community liaison for Northern Alachua and Bradford counties.
“If we can get the message out about mouth and throat cancer, it’s saving someone’s life.”
To read about disparities in breast cancer research, click here.