Native American Cancer Education for Survivors (NACES)

描述（由申请人提供）：“美国土著乳腺癌幸存者教育”（NACES）研究了生活质量（QOL）教育干预，以解决美国土著乳腺癌幸存者所经历的较差QOL。 这些妇女的生活乐趣减少，幸福感减弱，各种工作表现不佳。 这项为期五年的前瞻性随机研究的目标是评估旨在改善美洲原住民乳腺癌幸存者生活的干预措施。 我们将与大约380名参加幸存者社区的美洲原住民乳腺癌幸存者社区合作，该社区被称为“美洲原住民癌症幸存者支持网络”。 该网络的成员是一个理想的群体，因为他们代表了一般的美洲原住民人口，大多数人都有严重的问题，与他们的癌症经验，妨碍他们的生活质量。 将邀请所有在该网络登记的合格妇女参加，并从这些志愿者中随机挑选200人作为研究参与者。 一半被随机分配到对照组（常规护理），另一半被分配到教育干预组。 其他自愿参加但未被随机选择参加研究的人将被要求在整个干预开发和预测试过程中与患者辩护律师合作。 这个项目代表了一个独特的机会，研究与美洲土著癌症survwors干预。 与美国其他种族和族裔群体相比，美洲原住民乳腺癌的五年相对生存率仍然最低。本研究的目的是通过提供教育、治疗和社区资源来改善幸存者的生活质量，然后衡量幸存者生活质量的相应改善。 主要的研究问题是，“是否有一个文化相关的癌症干预措施，可以适应个别美洲原住民癌症患者，以解决个人需求，增加获得和利用资源，提高美洲原住民癌症幸存者的生活质量？本研究的具体目的是：（1）在研究人群中实施和分析QOL调查的结果;（2）以模块格式开发和预测试交互式和自适应QOL干预，以增加美国土著癌症幸存者获得选定的生理，心理，社会文化和经济资源的机会;（3）随机选择符合条件的网络成员自愿参加研究，实施干预;（4）评估模块在改善生活质量方面的有效性。 这项研究将包括四个阶段，对应于我们的每一个目标。 经过培训的本地患者倡导者将与患者合作，选择和实施患者个人感兴趣的模块。 每个模块有三种格式可供患者使用：打印、DVD、网络。 患者倡导者将提供那些被确定为有效影响05年QOL的模块。 调查结果将首先分发给网络成员，然后分发给社区和专业组织。

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.