Investigating ethnic differences in prostate cancer experiences

Black men have the highest incidence of prostate cancer and die more often of the disease than any other group of American men, yet there are significant differences among black men in terms of quality of life and outcomes. Now, University of Florida researchers are exploring these differences among groups of culturally diverse black men with prostate cancer, seeking to understand why.

“We wanted to take a step back and do within-group comparisons of black men with prostate cancer who are native-born African-American, African immigrants and Caribbean immigrants,” said Folakemi Odedina, Ph.D., a UF professor of pharmacy and associate director of health disparities for the UF Shands Cancer Center. “These groups are all genetically predisposed to get prostate cancer, but when you look at their experiences in terms of how the disease affects their lives and how they cope with it, there are a lot of differences among them.”

Odedina’s three-year study, funded by a $1.02 million Department of Defense grant, is the first to compare differences in morbidity, quality of life and survival among diverse groups of black men, who experience a 60 percent greater risk of developing prostate cancer than whites, according to the National Cancer Institute. That risk more than doubles for men with a father or brother who has had prostate cancer. Black men also are more likely to be diagnosed when their cancers are at an advanced stage, and they are more than twice as likely as white men to die of the disease.

“Our study will use ‘grounded theory’ to look at the broad continuum of prostate cancer care for these men in an effort to understand how to successfully deal with the disease through every phase, including prevention, detection, diagnosis, treatment, survivorship and advocacy,” Odedina said.

Grounded theory is a form of ethnographical analysis wherein investigators don’t begin with a hypothesis as the theoretical framework for the study. Instead, investigators begin by collecting data — in this case, interviews with black men and their wives or caregivers about their experiences, beliefs and feelings about the detection, treatment and survival of prostate cancer. During the grounded theory process of social-science super sleuthing, hypotheses are then reverse-engineered from the data.

To capture this data, 2,000 black men will be randomly selected from the Florida Cancer Data System database. In 2010, the most recent year for which data are available, that database represented about 38,000 black men in Florida.

Investigators will contact each man via telephone or postcard in an effort to identify which group he may fall into, whether native-born African-American, African immigrant or Caribbean immigrant. Sixty of these men will be asked to participate in in-depth interviews, some of which will use a method called “photo voice.” In this method, each participant is given a disposable camera and asked to take photos over the course of a week of people, places and objects that define his prostate cancer experience. At the end of the week, the photos are printed and each man is asked to tell the stories behind the photos and their impact on his prostate cancer experience.

As part of the prostate cancer care and survivorship model for black men, the study also will produce a video documentary of 30 of the men and their caregivers talking about the full range of their prostate cancer experiences. The team also will explore the process of how men move from being prostate cancer patients to becoming prostate cancer advocates in their communities. Workshops throughout the state will take place during the final phase of the effort, to report findings back to African-American, African and Caribbean communities and to cultivate prostate cancer advocates in those communities.

“I think the whole thing we have to look at, in reality, is that for many people, the word cancer conjures up such fear that the fear often times overrides the individual’s need to get the facts that will enable them to fight the disease,” said Virgil H. Simons, a prostate cancer survivor and founder of The Prostate Net, an international, not-for-profit prostate cancer patient advocacy organization. “This study is important because it will help people understand some of those things can be controlled and dealt with on an individual basis, and identify those things that can be addressed on a community basis.