Barriers to minority participation in breast carcinoma prevention trials

Grann, Victor R.; Jacobson, Judith S.; Troxel, Andrea B.; Hershman, Dawn L.; Karp, Julie Katz; Myers, C. N.; Neugut, Alfred I.

doi:10.1002/cncr.21164

Cited by 42 publications

(28 citation statements)

References 22 publications

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“…In addition to individual barriers, such as patient desire for control over medical decisions, fear of risks, loss of privacy and lack of family support, many of the barriers noted for recruitment of healthy participants are structural and access issues that may reflect institutional racism, such as: complex trial design, primary care provider reluctance; transportation and costs associated with participation; and characteristics of the health care system (Tangrea 1997;Kinney et al 1998;Ruffin & Baron 2000;Frayne et al 2001;Ford et al 2003a). For breast cancer prevention trials, bias in the GAIL model (a risk assessment tool for general breast cancer risk screening) (Gail 1992) for assessing genetically-based breast cancer risk reduced the eligibility of ethnic/racial minorities according to one recent study (Grann et al 2005). Younger age and higher socioeconomic, education, and occupational status, as well as prior experience with a clinical study have been shown to increase the likelihood of participation in chemoprevention and other prevention studies (Tangrea 1997;Zhu et al 2000).…”

Section: Introductionmentioning

confidence: 99%

Recruiting Low-Income Healthy Women to Research: An Exploratory Study

2007

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Objective-The study goals were (1) to assess the feasibility of using an existing telephone health information and referral service for low-income, ethnically diverse women to recruit women for research participation; (2) to assess the feasibility of recruiting low-income, African American and Latino men into health research through the women callers to the telephone service; and (3) to describe the challenges women face and the strategies they use when talking to men about the men's health and research participation.Design-We recruited women for individual semi-structured qualitative interviews via the Every Woman Counts (EWC) telephone information and referral service, a California Department of Health Services Cancer Detection Program. This paper describes our eligibility and recruitment assessment, and our qualitative data from 23 interviews with low-income African American and Latino women who called EWC.Results-We found that it was feasible to recruit women, but not to recruit men through women who call this telephone service. Almost 50% (113) of women demographically eligible for recruitment, completed our screening questionnaire, despite calling EWC for a different purpose. Some 48% (54) of those women were eligible for an interview. Of interview-eligible women, 58% (10) of African Americans and 35% (13) of Latinos completed an interview. Only 17% (4) of women referred a man for participation in an interview for our study. Several themes emerged from our analysis of interview data: (1) women's role in men's health can be significant but is often uneasy; (2) challenges when talking to men about their health include health access, gender dynamics, and men's fear of health care; (3) women's understanding of research may be limited; (4) women use a range of strategies to address and overcome men's resistance to taking care of their health and participating in research. Conclusions-The challenges women face when talking with men about their health affect their ability to effectively speak to men about research participation. However, EWC and similar telephone health services may be an effective means for recruiting low-income women to chemoprevention and other studies requiring healthy participants. HHS Public Access

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Section: Introductionmentioning

confidence: 99%

Recruiting Low-Income Healthy Women to Research: An Exploratory Study

2007

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“…Patient data used to develop the Gail model were collected exclusively from Caucasian women, and has been shown to be inaccurate in determining the risk of breast cancer in African American women (Bondy and Newman 2002). The inaccuracies of the Gail model in AAW extends beyond predicting personal risk; for example, African Americans represented \4% of patients enrolled in the NSABP clinical trial to determine the effects of prophylactic use of Tamoxifen (Fisher et al 1998), and CW were 45 times more likely than AAW to be considered eligible to enroll in the STAR trial (Grann et al 2005), thus excluding AAW from participating in important clinical trials and limiting the applicability of trial results to AAW due to small sample size.…”

Section: Discussionmentioning

confidence: 99%

The Clinical Breast Care Project: an important resource in investigating environmental and genetic contributions to breast cancer in African American women

Ellsworth

Zhu

Bronfman

et al. 2007

Cell Tissue Banking

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Age at diagnosis, pathological characteristics, and tumor behavior differ between African American (AAW) and Caucasian women (CW) with breast cancer, with AAW having more aggressive tumors and higher mortality rates. Although both societal and molecular contributions to these disparities have been suggested, the African American population has traditionally been under-represented in research and clinical protocols, limiting the power of epidemiologic and molecular studies to provide better understanding of disease pathogenesis in this minority population. The Clinical Breast Care Project (CBCP) has developed a large tissue and blood repository from patients undergoing treatment for breast cancer, with previous history of breast cancer, counseled in the Risk Reduction Clinic, screened by routine mammography, or undergoing elective reductive mammoplasty. Recruitment of AAW into the CBCP was successful; 25% of the 2,454 female patients were African American, including 35% disease-free, 3% high-risk, 40% benign, 8% preinvasive and 14% with invasive breast disease. More than 500 data fields regarding lifestyle choices, socioeconomic status, health history and geography were collected from all participants, and all consenting individuals provided blood specimens for genomic and proteomic studies. Tissues were collected from all patients undergoing surgical procedures using protocols that preserve the macromolecules for downstream research applications. In addition, patients were followed after diagnosis, with >85% of patients providing ongoing and updated demographic and clinical information. Thus, recruitment efforts in the CBCP have resulted in collection of well-annotated information and research-quality specimens from a large number of AAW. This unique resource will allow for the identification of biological and environmental factors associated with the identification of genetic and non-genetic factors associated with the occurrence, detection, prognosis, or survival of breast cancer in AAW.

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“…Although studies have reported barriers to participation of minority subjects in chemoprevention studies, there is no data specifically for window-of-opportunity trials. 23 Interestingly, there is data suggesting that in populations previously exposed to clinical research, African Americans are no less willing to participate in clinical trials than Caucasians. 24 Due to the pilot nature of this survey, full validation of the survey instrument was not possible.…”

Section: Discussionmentioning

confidence: 99%

Predictors of Willingness to Participate in Window-of-Opportunity Breast Trials

Wisinski

Faerber

Wagner

et al. 2013

Clinical Medicine & Research

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Objective: We conducted a pilot survey to evaluate breast cancer patients' willingness to participate in a preoperative chemoprevention (ie, window-of-opportunity) study. Design:A 27-question written survey was developed and administered to participants. Setting:A breast cancer specialty clinic at the University of Wisconsin Hospital and Clinics.Participants: 30 adult patients with newly diagnosed operable breast cancer participated after signing informed consent.Methods: A convenience sample of 30 participants was recruited from July 2005 through January 2006. Participants were administered the survey in clinic. Univariate ordinal logistic regression models were used to identify predictors of willingness to participate in window-of-opportunity trials.Results: Overall, 26.7% of respondents were willing to participate in a research trial between the time of breast cancer diagnosis and surgery. Univariate ordinal logistic regression models identified that women with a prior history of breast cancer (P=0.060), prior research participation (P=0.006), more education (P=0.034), and self-reported breast cancer knowledge (P=0.043) were more willing to participate. On average, women preferred to have surgery 7 days (range 1-14) after their diagnosis, but the actual average wait time between diagnostic biopsy and surgery was 37.5 days (standard deviation = 23.4 days). Conclusion:There is ample time before breast surgery to conduct preoperative window-ofopportunity trials. Interventions aimed at expanding patients' breast cancer knowledge may improve accrual to window-of-opportunity studies.

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Barriers to minority participation in breast carcinoma prevention trials

Abstract: The authors gratefully acknowledge Rossy Sandoval, whose dedicated efforts in recruiting minority women to complete risk assessment forms for the Study of Tamoxifen and Raloxifene trial played an important role in making the current analysis possible.

Cited by 42 publications

References 22 publications

Recruiting Low-Income Healthy Women to Research: An Exploratory Study

Recruiting Low-Income Healthy Women to Research: An Exploratory Study

The Clinical Breast Care Project: an important resource in investigating environmental and genetic contributions to breast cancer in African American women

Predictors of Willingness to Participate in Window-of-Opportunity Breast Trials

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