1 Department of Epidemiology, Roswell Park Cancer Institute, Buffalo, NY 14263
2 Derald H. Ruttenberg Cancer Center, Mount Sinai School of Medicine, New York, NY 10029
3 Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC 27599
4 Department of Community Medicine, Mount Sinai School of Medicine, New York, NY 10029
5 Arkansas Cancer Research Center, University of Arkansas for Medical Sciences, Little Rock, AR 72205
The recent Journal paper by Cabral et al. (1) addresses an epidemiologic issue of paramount importance in the conduct of case-control studies. With falling rates of participation in research, determination of a proper control group, as well as approaches to encouraging full participation by all those who are eligible, will greatly impact the future utility of such studies. In their paper, the authors report that, while recruitment by random digit dialing of African Americans was much more successful than use of Health Care Financing Administration lists (63 percent vs. 19 percent), identification of controls through community-based approaches resulted in the highest participation rates (82 percent). However, it was not possible to calculate an actual denominator for the number of persons contacted. Community-based approaches clearly resulted in better response rates in this study, but it is unclear whether these sources of controls (churches, health fair attendees, senior centers, university employees, and physician practices) are representative of the populations from which the cases arose and will be subject to sampling bias. The authors concluded that "much work is still needed in future studies to determine optimal and valid recruitment methods for minorities" (1, p. 277).
In the context of studies of breast cancer in African-American women, we have developed a method whereby cancer survivors recruit cases and controls; the method allows for use of population-based approaches to identify controls but does not sacrifice response rates. Cancer survivors can be highly successful in increasing cancer awareness, medical trust, and ultimately study response rates in their roles as lay health advisors, where they bridge the gap between researchers and community participants. Our approach to involving breast cancer survivors in the conduct of etiologic studies arose from The Witness Project in Arkansas, developed to increase awareness of breast and cervical cancer and to encourage screening for early detection in rural African-American communities (2) through the use of African-American breast and cervical cancer survivors as role models and lay health advisors (3). While The Witness Project was designed to reach rural African-American women for the purpose of increasing early detection, we believed that this role-model method would also be effective for recruiting women into epidemiologic studies. We have applied this approach in two ongoing population-based, case-control studies in different regions of the United States: rural Arkansas and metropolitan New York City.
After case and control eligibility and contact information are determined, breast cancer survivors are matched by ethnicity to potential participants in the study. A postcard with a photograph of the recruiter is mailed, introducing the recruiter and describing her reasons for contacting the recipient in the near future. The recruiter subsequently telephones the recipient to describe study goals and to discuss the interview procedure, following a basic script that was tested in focus groups and role-played with The Witness Project recruiters. These approaches have greatly increased response rates over earlier, more traditional approaches.
Our experience with the use of breast cancer survivors as recruiters indicates that such collaboration in epidemiologic studies may help to increase participation rates among both cases and controls. In addition, the survivors are simultaneously networking with other women recently diagnosed with the disease and are able to provide emotional and practical support. Common reasons for not participating in research studies of cancer are a lack of familiarity with research and distrust of the medical establishment. By using cancer survivors in recruitment efforts, we can possibly reassure the public of the integrity of the studiesresulting in higher participation rates and in more complete data and fewer selection biasesand encourage support relationships to be formed through contacts with breast cancer survivors.
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