Native American Cancer Education for Survivors (NACES)

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DESCRIPTION (provided by applicant): "Native American Cancer Education for Survivors" (NACES) examines a quality of life (QOL) education intervention to address the inferior QOL experienced by Native American breast cancer survivors. These women have diminished enjoyment of life, weakened sense of well-being and poor performance of various tasks. The goal of this five-year prospective randomized study is to evaluate interventions designed to improve the lives of Native American breast cancer survivors. We will work with a community of approximately 380 Native American breast cancer survivors enrolled in the survivor community called the "National Native American Cancer Survivors' Support Network". Members of the Network are an ideal cohort because they are representative of the general Native American population, and most have significant problems related to their cancer experience which hamper their quality-of-life. All eligible women enrolled in the Network will be invited to participate, and of those volunteers, 200 will be randomly selected as study participants. Half will be randomly assigned to the control (usual care) and half to the education intervention group. Others who have volunteered to participate but were not randomly selected for the study will be asked to work with a Patient Advocate throughout the intervention development and pretest process. This project represents a unique opportunity to study an intervention with Native American cancer survwors. Native Americans continue to have the poorest five year relative survival from breast cancer in comparison with other racial and ethnic groups in the U.S. The purpose of the study is to improve survivors' QOL through providing access to educational, treatment, and community resources, and to then measure the consequent improvement in survivors' QOL. The primary research question is, "Does a culturally relevant cancer intervention that can be adapted by the individual Native American cancer patient to address personal needs increase access to and utilization of resources that improve the Native American cancer survivor's QOL?" The specific aims of this study are to: (1) implement and analyze results from a QOL survey in the study population; (2) develop and pretest an interactive and adaptive QOL intervention in modular format to increase access to selected physiologic, psychosocial, sociocultural, and economic resources for Native American cancer survivors; (3) implement the intervention with randomly selected, eligible Network members who have volunteered to take part in the study; and, (4) evaluate the effectiveness of the modules in improving QOL. The study will consist of four phases corresponding to each of our aims. Trained Native Patient Advocates will work with the patients to select and implement modules of personal interest to the patient. Three formats of each module will be available to the patient: print, DVD, web. Patient Advocates will offer those modules determined to be effective in influencing QOL in year 05. Findings will be disseminated first to Network members, then to community and professional organizations.