A research study by the Division of Cancer Studies at King’s College in London sought to find reasons why black men are consistently underrepresented in research studies, despite their being nearly three times more likely to develop prostate cancer (PCa) and often presenting with the most aggressive forms of the disease.
The Study Group
Two focus groups (n=10 and n=6) of black and black Afro-Caribbean males under treatment at Guys Hospital in London, UK, were assembled to enable the researchers to gather information, including the barriers and facilitators for recruitment into research studies. Previous similar studies had yielded a recurring theme of distrust in researchers, with individuals believing that researchers had failed to factor in the welfare of the participants. The most common suggestion is that these long-held attitudes stem from historical studies, such as the famous Tuskegee Syphilis Study, which saw researchers withhold a new treatment (penicillin in 1947) in favor of continuing to study the progression of the disease.
Expected and Surprising Findings
The sessions produced general and specific responses that were both expected and surprising. The major theme highlighted in both groups was mistrust – both among the participants themselves or projected by them as existing within the black community. Certain individuals spoke up about the need to have the research be better explained, thus confirming that a lack of understanding about research and lack of transparency about the treatment plan were viewed as “undesirable.”
Additionally, a higher-than-expected percentage of the men spoke of the cultural importance of herbal remedies, with the researchers identifying a strong connection with medicinal herbs as being a possible factor in the reluctance of this demographic to immediately seek out or consent to research studies.
Others in the study were confused about what fell under the heading of “medical research,” with several showing little or no understanding about the widespread prevalence of prostate cancer and its underlying etiology (i.e. causation). Also, there looks to be a need to take more time to explain the importance of medical research and how clinical trials pave the way to better treatments, more effective medicines, and improved survivability among those diagnosed with the most serious cases.
Similarities with the USA
In short, there exists a wide information and trust gap that needs to be bridged among doctors, researchers, and the black community in the UK when it comes to the facts about prostate cancer and the treatment of the disease. And there are statistical similarities in the U.S., particularly when it comes to the disproportionately few blacks who take part in PCa clinical trials and the number of black men who initially present to primary care doctors and urologists with aggressive cases. What cannot be ignored is an urgent need to bring culturally-sensitive programs that include awareness, education, and PSA screenings to communities where those most at-risk – African-American and Afro-Caribbean men – can most benefit from a straightforward message of early detection/more options/better outcomes.
Read the original article online: http://ecancer.org/journal/10/full/695-research-engagement-among-black-men-with-prostate-cancer.php