Determinants of participation in the Study of Tamoxifen and Raloxifene (STAR): Experience of a minority-based community oncology program

Abstract

1011 Background: To increase minority participation in STAR, outreach efforts were implemented at Howard University Cancer Center (HUCC). A large number of women completed risk assessment forms (RAF) to determine risk eligibility for the trial. To learn about the decision-making of trial participation, we compared STAR participants (SP) and STAR decliners (SD). Methods: This pilot study is a prospective, observational study of women who are risk-eligible for STAR. 25 women were contacted for an information session; 7 participated. Four previously enrolled SP were included in the study (N = 11). Subjects completed a survey to assess: education; reasons for interest in STAR; influence of social environment on the decision; expectations regarding STAR; and understanding of STAR. To enhance questionnaire data, in-depth, open-ended interviews were conducted. Results: The sample consisted of 7/11 African-American (AA), 2/11 white, 1/11 Brazilian, and 1/11 Japanese. The range of education was similar in all groups as were answers to reasons for interest in STAR, influence of social environment, expectations regarding STAR, and understanding of STAR. 5/11 were SP (all AA); 4/11 were SD and 2/11 wanted to enroll but were ineligible (SI) from comorbidity and menopausal status. 3/4 SD had previously participated in research. 2/4 SD had a sister with breast cancer; 0/4 had a mother with breast cancer. In contrast 2/2 SI and 3/5 SP had a mother with breast cancer; one also had a sister with breast cancer. 1/5 SP only had a sister with breast cancer. The 4 SPs wanted to honor their relative and forego the suffering they witnessed. 1/5 SP had strong community values and participated to enhance treatment opportunities for AA women. Advancing treatment and prevention options for AA women was important to all SP. HUCC was a very important factor for SP as they consider it a premier institution focusing on bettering AA lives. Conclusion: The participants’ experiences at the institution offering the trial, their perception of the importance of trial results for others, and personal disease experience were important factors in the decision-making for participation in the STAR chemoprevention trial. No significant financial relationships to disclose.