African American participation in cancer clinical trials

Abstract

Background: According to the Food and Drug Administration, African Americans (AAs) have been habitually underrepresented in cancer clinical trials (CCTs). This under-enrolment has contributed to cancer disparities despite the implementation of policies to improve AA accrual. This systematic review aimed to determine (1) Why AAs are participating in CCT at lower rates compared to other ethnic/racial groups and (2) Are there any tools that have definitively improved AA participation or addressed the barriers associated with their lack of participation.Methods: Searches were carried out in PubMed, Project MUSE and EBSCO which were confined to four databases (BASE, PsycINFO, CINAHL and MEDLINE). Literature published between 2010 and 2020 were filtered with the inclusion and exclusion criteria and then a mixed methods appraisal tool was used to check the quality of the articles. Studies were separated into two categories to extract and synthesise data based on the emerging themes. Results:Frequent reasons for a lack of participation involved provider related issues, family concerns, health literacy and trust among others. Interventions cited as successful in improving AA participation or addressing a barrier often revolved around communitybased participatory research and educational CCT videos/tools. Recommendations/Conclusion:Educating AA patients about the biomedical research process, addressing concerns about CCTs, building trust with community members and improving communication with healthcare providers could improve AA participation in CCTs. Future interventions should consider the effect of diversified healthcare teams in addressing trust deficit in CCTs among AAs. Healthcare practitioners seeking to consent AA into CCTs and biomedical research could consider incorporating cultural competence into their practice for effective interaction with this population and to address their questions about biomedical research.

Disparities in awareness of and willingness to participate in cancer clinical trials between African American and White cancer survivors

“…A study that looked at cancer health literacy among African Americans, Whites, and Hispanics backed with similar findings. On a cancer health literacy test, African American participants scored much lower than white participants [28]. The relatively lower level of health literacy among African Americans could lead to problems in understanding the informed consent process in biomedical research, a common obstacle to African American involvement in CCT [27,29].…”

“…The relatively lower level of health literacy among African Americans could lead to problems in understanding the informed consent process in biomedical research, a common obstacle to African American involvement in CCT [27,29]. Another qualitative study interviewing African American cancer survivors at a safety-net hospital identified that a lack of understanding of cancer clinical trials was one of the major barriers of participation in cancer trials [28,30]. The study reported that many survivors were confused and even could not be differentiated between a cancer clinical trial and treatment of cancer [31].…”

Sarcoidosis: Updates on therapeutic drug trials and novel treatment approaches

“…Sarcoidosis occurs three times more commonly in African Americans and presents with disproportionate severity in patients of a lower socioeconomic status (SES) (40,42,45,103,104), yet most trial populations thus far have not been reflective of this racial prevalence of disease (105,106). Several studies show that African Americans are less likely to both qualify for and to participate in clinical trials due to several reasons such as mistrust in the system, lack of interest in clinical trials, fear and stigma associated with participation, and a perception that they may not be compliant with trial protocols (107)(108)(109)(110). Several strategies that have improved clinical trial participation for minorities and the underserved in other diseases may also be deployed in sarcoidosis (108,111,112).…”

Increasing Racial and Ethnic Diversity in Cancer Clinical Trials: An American Society of Clinical Oncology and Association of Community Cancer Centers Joint Research Statement

“…9,16,17 Inclusion of diverse study participants varies by institution and cancer type, 3,9 but participation of people who are Black and/or Hispanic/Latinx has remained consistently low or decreased. 3,18 Under-representation of racial and ethnic minority populations may be more extreme, because < 33% of cancer trials report race and ethnicity data. 3,9 The Food and Drug Administration's (FDA) Oncology Center of Excellence has encouraged trial sponsors to set enrollment targets that reflect epidemiologic characteristics of the disease.…”