Native American Cancer Education for Survivors (NACES)

描述(由申请者提供)：“美国原住民癌症幸存者教育”(NACES)调查了一项生活质量(QOL)教育干预措施，以解决美国原住民乳腺癌幸存者所经历的较低的生活质量。这些女性的生活乐趣减少，幸福感减弱，各项工作表现不佳。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名在幸存者社区登记的约380名美洲土著乳腺癌幸存者合作，该社区名为“全国美洲土著癌症幸存者支持网络”。该网络的成员是一个理想的队列，因为他们代表了普通的美洲原住民人口，大多数人都有与他们的癌症经历有关的严重问题，这阻碍了他们的生活质量。所有在该网络登记的合格妇女都将被邀请参加，在这些志愿者中，将随机挑选200人作为研究参与者。 一半随机分配给对照组(常规护理)，另一半分配给教育干预组。其他自愿参与但不是随机选择参加研究的人将被要求在干预开发和预试过程中与患者代言人合作。这个项目是研究美洲原住民癌症幸存者干预措施的一个独特机会。与美国其他种族和民族相比，美洲原住民的乳腺癌五年相对存活率仍然是最低的。这项研究的目的是通过提供获得教育、治疗和社区资源的机会来改善幸存者的生活质量，然后衡量由此而来的幸存者生活质量的改善。主要的研究问题是，“一种与文化相关的癌症干预措施，可以由个别美洲原住民癌症患者采用来满足个人需求，是否会增加获得和利用资源的机会，从而改善美洲原住民癌症幸存者的生活质量？”这项研究的具体目的是：(1)在研究人群中实施和分析生活质量调查的结果；(2)开发和预测模块化形式的互动和适应性生活质量干预措施，以增加美洲原住民癌症幸存者获得选定的生理、心理社会、社会文化和经济资源的机会；(3)对随机选择的、符合条件的自愿参加研究的网络成员实施干预；以及(4)评估这些模块在改善生活质量方面的有效性。这项研究将分为四个阶段，与我们的每个目标相对应。训练有素的原住民患者律师将与患者合作，选择并实施患者个人感兴趣的模块。每个模块的三种格式将提供给患者：打印、DVD、网络。患者权益倡导者将提供那些被确定为在05年有效影响生活质量的模块。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.