Statement of Purpose: White women are slightly more likely to develop breast cancer than are black/African-American women. However, greater proportions of black women are diagnosed with late state disease and have higher mortality rates. Age-adjusted risk of death for breast cancer in Region 5 of the California Cancer Registry of which women from the San Bernardino form a major segment was significantly above the California average from 1999–2003 and was particularly high for non-Hispanic black women. The incidence and mortality patterns reveal the tragedy produced by the failure to detect breast cancer in the early stage. Participation rates by black women in clinical trials have been low in the Region 5 of the California Cancer Registry. The purpose of this study was to facilitate a culturally sensitive breast cancer clinical trial education to black women in the Inland Empire. This will help reinforce the importance of making an informed decision about participation in breast cancer clinical trials, which will lead to reduced breast cancer incidence, morbidity and mortality in black women.

Methodology: A descriptive analysis study was used to evaluate knowledge, attitudes and practices toward breast cancer clinical trial participation. To achieve triangulation and keeping in line with established focus group methodology, five focus groups comprising of 10–12 persons per group were selected to represent important dimensions of knowledge and experiences that included a total sample size of 36 women. The groups included healthy women, breast cancer patients, breast cancer survivors, minority health care providers and community advocates. We used knowledge, attitudes, behavior and perception-based questionnaire to assess changes before and after the educational experience.

Results: Suggestions were made to improve the existing NCI's breast cancer clinical trial education presentations to make them culturally sensitive and attractive to black women. Misconceptions about controls, placebos, randomization, and the “Tuskegee Study of Untreated Syphilis in the Negro Male” were addressed. Barriers to participation included lack of time, women being head of single family household, transportation, time off from jobs, and being unsure about who covers the clinical trial expenses. Free transportation and mobile clinics were identified as the most effective means of reaching out to the majority of black women. The key finding was that approximately 80% of the women were willing to participate in clinical trials but were not given opportunities to participate in breast cancer clinical trials. Approximately 75% of the women believed that they do not have wellinformed decision making opportunities for their health.

Conclusion: This pilot study suggests that black women in the Inland Empire lack educational and community-based participatory research opportunities because physicians do not refer them to breast cancer clinical research trials.

Supported by the Susan G Komen for the Cure Inland Empire Affiliate.

Second AACR International Conference on the Science of Cancer Health Disparities— Feb 3–6, 2009; Carefree, AZ