PHILADELPHIA (September 14, 2020)—Researchers at Fox Chase Cancer Center and Temple University College of Public Health recently published survey results that explore the perceptions and concerns among African American patients regarding participation in cancer clinical trials.
“We were really interested in examining the barriers for underrepresented communities’ participation in clinical trials,” said Linda Fleisher, PhD, MPH, the co-principal investigator for the study and associate research professor in the Cancer Prevention and Control Program at Fox Chase.
Sarah Bauerle Bass, PhD, MPH, an associate professor at Fox Chase and director of the Risk Communication Laboratory at Temple, was co-principal investigator for the study. The lead author was Mohammed Alhajji, PhD, MPH, who was a doctoral candidate and research assistant in the lab when the research was conducted.
“We were interested in understanding the reasons why some African Americans decide to participate,” Fleisher said, “in hopes of developing interventions that address the underrepresentation of African Americans in cancer trials so that our clinical trial results are inclusive of diverse populations.”
The researchers recruited an equal number of African American patients who had participated in clinical cancer trials along with those who had not. Patients were recruited from both Fox Chase and Temple. Researchers then conducted a survey with those groups to clarify whether these individuals were offered clinical trials, what beliefs they held about clinical trials, and what types of barriers they believed existed to participating in these trials.
Results of the survey showed that perceptions among the groups differed significantly in three areas: helpfulness of clinical trials, facilitators to participate in clinical trials, and barriers to participating in clinical trials.
“We found that those who did participate had stronger positive beliefs about clinical trials. We also found that those who had not participated were more afraid to be part of clinical trials and were worried about their health insurance. They were also concerned they might become sicker,” said Fleisher. “Another interesting point was that some of the individuals who hadn’t participated said no one ever talked to them about a clinical trial.”
Analysis of the results indicated that those who were not asked about clinical trials and had not participated differed significantly in their views in all areas compared with those who had participated. Additionally, clinical trial participants reported significantly lower levels of decisional conflict in most items compared to those who had not been asked to participate and those who had been asked but declined to participate.
Fleisher added that the study illuminates the need to design more tailored interventions around clinical trials. “Understanding these barriers can help researchers design more culturally appropriate interventions and develop tools for providers,” she said.
“Concerns about getting sicker or health insurance need to be addressed. It also speaks to the need for this dialogue between patients and their providers around these kinds of emotional concerns,” said Fleisher. “By addressing these concerns we may find that, particularly among African American patients or patients who have more concerns, we’re able to help them make more informed decisions about participating.”
The study, “Comparing Perceptions and Decisional Conflict Towards Participation in Cancer Clinical Trials Among African American Patients Who Have and Have Not Participated,” was published in the Journal of Cancer Education.