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Abstract A56: Adaptation of a cancer clinical trials educational program for African Americans and Latinos
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https://doi.org/10.1158/1538-7755.disp13-a56Abstract
Abstract The purpose of this study was to educate Latino and African American urban populations about cancer clinical trials. Compared to whites, both African Americans and Latinos tend to have lower access to cancer treatment and to be diagnosed at advanced stages, trends associated with increased mortality and more difficult treatments. Clinical trials offer the possibility of developing improved treatments and participants may access treatments before they are widely available. Yet, while overall 3-5% of cancer patients participate in clinical trials, a lower proportion of ethnic minorities participate, resulting in limited generalizability of outcome data on the effectiveness of interventions to prevent and control cancer among underrepresented groups, and less access to newer treatments. Previous research has identified barriers to minority participation in clinical research related to scientific literacy (including fear of mistreatment), language, and civic literacy (lack of trust in biomedical systems). This paper describes the adaptation of a community-based cancer clinical trials educational program from the West Coast of the United States to the East Coast. Researchers and program staff from the two sites worked closely together to share materials, including the pre- and post-program questionnaires and the curriculum formatted in PowerPoint. The program curriculum was revised to be consistent with contextual factors, in order to be culturally competent in the adapting region, as follows. Minority cancer clinical trial participants who were representative of local populations were invited to participate in videotaped interviews about their research experiences. Taped segments of local interview subjects were integrated into the presentation, and segments featuring West Coast research participants were removed. The Spanish language in the curriculum was revised to match regional usage of Latino groups dominant in the East Coast region, while attempting to maintain fidelity with the original meaning. Community outreach, program delivery, and data collection methods were revised to be compatible with the capacity of the adapting site, including revising the measures to match Spanish-language changes made in the curriculum and shifting from written questionnaires to Audience Response electronic technology. Every possible effort was made to otherwise maintain fidelity during implementation and measurement. In the data analysis phase, the research staff is sharing syntax for variable recoding and creation, and will discuss and compare findings across both sites. To test the feasibility of the adaptation, a recruitment goal of 120 participants (40 African Americans, 40 English-speaking Latinos, and 40 Spanish speaking Latinos) was planned. To meet our recruitment goals, over all, 143 people attended our replication programs. To measure participant responsiveness, participants were asked to provide open-ended written comments. The vast majority expressed satisfaction with the presentation. The main themes identified from their comments were that the program was interesting, important, and useful, and that they learned something new. Negative feedback regarding the presentation was minor and related to technical difficulties which prolonged the meetings. We discuss the procedures and lessons learned during the adaptation and feasibility testing of this intervention. This study demonstrates that adaptation of a cancer clinical trials education program from one geographic region to another is feasible, and that the process and the initiative benefit from the sharing of materials between multiple sites. These data contribute to the growing literature on dissemination and implementation research in cancer control and prevention. Citation Format: Debra J. Pelto, Georgia Robins Sadler, Ogo Njoku, Maria Carina Rodriguez, Alma Behar, Vanessa L. Malcarne, Lina Jandorf. Adaptation of a cancer clinical trials educational program for African Americans and Latinos. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A56. doi:10.1158/1538-7755.DISP13-A56
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