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Recruitment and Retention of Minority Women in Cancer Screening, Prevention, and Treatment Trials

https://doi.org/10.1016/S1047-2797(00)00197-6Get rights and content

Abstract

Researchers are giving greater attention to the recruitment and retention of minority women in clinical studies because of their historical underrepresentation, despite their greater morbidity and mortality for many conditions. Using findings from four studies, this article examines documented barriers to the recruitment and retention of minority women to clinical cancer research and discusses effective recruitment strategies. Among the major barriers to recruitment were lack of awareness, lack of transportation, interference with work/family responsibilities, financial costs, negative side effects, and burdensome procedures. Effective recruitment strategies focused on using culturally targeted mass mailings and media presentations based on acquiring an understanding of the minority community. Recommendations are made for further study and implementation.

Introduction

Historically, women irrespective of race/ethnicity have been excluded from some clinical research for biological, social, economic and other reasons (1). Further, minority women, specifically African-American, Hispanic-American, American Indian, and Asian-American women, have not participated in clinical research proportionate to their numbers in the general population or proportionate to their rates of morbidity or mortality 1, 2. Only recently, with the enactment of the NIH Revitalization Act in 1993, have efforts focused on increasing the participation of women and minorities in clinical research. Specifically, the NIH Revitalization Act underscored the scientific importance of the participation of women and minorities in clinical research, so that findings from federally funded research would have validity and applicability for women as well as men, and for minority as well as nonminority persons. Given the past exclusion of women and minorities from clinical research as well as negative experiences of minorities in the health care system 1, 3, efforts to recruit and retain minority women in clinical research must surpass strategies directed at women across the board or efforts directed at specific minorities. Although minority women have some of the same barriers, issues, and concerns that all women face or that members of their minority group encounter, minority women have unique circumstances associated with their gender and racial/ethnic status that may affect their participation in clinical research. Special efforts are required to identify and understand the barriers to the recruitment and retention of minority women in clinical research so that effective interventions can be developed and implemented. Because clinical researchers do not necessarily have the expertise and knowledge pertaining to the recruitment and retention of minority women 3, 4, increasing the recruitment and retention of minority women in clinical research presents a significant challenge.

This article reviews findings from cancer screening, prevention, and treatment trials that have focused efforts on the recruitment and retention of minority women and presents evidence from four studies funded by the National Institutes of Health (NIH), three of which were supported specifically by the National Cancer Institute (NCI). The discussion is provided in two parts: the first part focuses on studies that identified barriers to the recruitment and participation of minority women in clinical research, and the second part reviews findings pertaining to successful recruitment and retention strategies. This article concludes with a synthesis of the barriers documented across studies, a summary of effective strategies, and a discussion of priority areas for future research.

Section snippets

Barriers to recruitment and retention of minority women

The following three studies examine barriers to the participation of minority women in clinical cancer research. The first study examines “intention” to enroll in a clinical chemoprevention study among women of various racial and ethnic backgrounds who were taking part in a colposcopy clinic. The second study looks at barriers to participation in a treatment trial experienced by African-American and Caucasian women recently diagnosed with breast cancer. The third study presents findings from

Effective recruitment strategies targeted to minority women

Although the three studies described in the previous section identified barriers to the recruitment and retention of minority women in clinical trials, the following study provides evidence that strategies can be devised and implemented for effectively recruiting and retaining minority women. As a prevention trial, it demonstrates the importance of special targeted efforts for minority women of various racial and ethnic groups.

Discussion

Although the four studies reviewed in this paper differ in purpose and research design, findings from these studies provide further documentation of the barriers to the recruitment and retention of minority women to clinical cancer research. In addition, these studies provide evidence of successful recruitment strategies that were used across different racial/ethnic groups. Below is a summary that synthesizes findings pertaining to minority women across studies and presents issues for further

Acknowledgements

The authors wish to thank Wayne State University graduate student, Lari Warren-Jeanpierre, for her assistance in the preparation of this manuscript. All four of the studies cited in the article were conducted with funding from the National Institutes of Health, and in some cases from the National Cancer Institute. The studies were supported as follows: 1-R03 CA 73324-01 to the University of Texas- Houston; 5R03 CA70587-02 to Wayne State University; 1 R01 CA73364, N01-CN-25427, and NIH

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