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- Title
Increasing Clinical Trial Participation of Black Women Diagnosed with Breast Cancer.
- Authors
Fairley, Ricki; Lillard Jr, James W.; Berk, Alexandra; Cornew, Sophia; Gaspero, Joseph; Gillespie, James; Horne, LaTrisha L.; Kidane, Sabrina; Munro, Sandra B.; Parsons, Matthew; Powers, Emily R.; Rizzo, Suzanne E.; Tishcler, Alyson; Wohl, Hope; Weiss, Marisa C.
- Abstract
Despite racial disparities in breast cancer mortality, Black women remain underrepresented in clinical trials. In this mixed methods research, 48 Black women were engaged via focus group discussions and in-depth interviews to better understand the lived experience of women with breast cancer. The results of this qualitative study informed the development of a subsequent online survey to identify barriers, motivators, and other factors that influence decision-making by Black women diagnosed with breast cancer when considering clinical trial participation. Among the 257 Black survey participants, most (95%) were aware of clinical trials; of those, most viewed them as lifesaving (81%) and/or benefiting others (90%). Negative perceptions such as serious side effects (58%), not receiving real treatment (52%), or risk of potential harm (62%) were indicated. Barriers included financial expenses (49%), concerns that their condition could be made worse (29%), that they would receive a placebo (28%), or that treatment was unapproved (28%). Participants were more likely than their health care providers (HCPs) to initiate discussions of clinical trials (53% versus 33%), and 29% of participants indicated a need for more information about risks and benefits, even after having those conversations. The most trustworthy sources of information on clinical trials were HCPs (66%) and breast cancer support groups (64%). These results suggest that trusted communities are key for providing education on clinical trials. However, there is also a need for HCPs to proactively discuss clinical trials with patients to ensure that they are adequately informed about all aspects of participation.
- Subjects
HEALTH literacy; DISEASE exacerbation; PATIENT education; HEALTH services accessibility; FOCUS groups; RESEARCH funding; BREAST tumors; CLINICAL trials; INTERVIEWING; HEALTH; DECISION making; INFORMATION resources; BLACK people; EXPERIENCE; TRANSPORTATION; RESEARCH methodology; PATIENT-professional relations; TRUST; COMMUNICATION; CANCER patient psychology; ADVERSE health care events; PATIENT participation; PATIENTS' attitudes; MEDICAL care costs
- Publication
Journal of Racial & Ethnic Health Disparities, 2024, Vol 11, Issue 3, p1701
- ISSN
2197-3792
- Publication type
Article
- DOI
10.1007/s40615-023-01644-z