BRCA1/2 TESTING--PATIENT UPTAKE AND TREATMENT CHOICES

描述(改编自研究人员摘要)：基因测试 与家族性乳腺癌和卵巢癌(BRCA1和BRCA2)相关的有 最近已可用于临床，并可能被用于 占总人口的很大比例。然而，也存在争议。 关于BRCA1/2测试，因为对 测试，缺乏关于治疗效果或预防措施的数据 乳腺癌和卵巢癌，对心理社会影响的担忧 检测，以及缺乏对患者和 医疗保健提供者。一般认为，较大的患者 通过咨询和知情同意对检测的理解将导致 以最大限度地减少不适当的测试使用或糟糕的医疗或 作为测试结果的情绪结果。然而，到目前为止，还没有研究表明 直接解决患者理解或广泛咨询的问题 服务与患者行为有任何关系，或者是否有其他 患者对保密性的担忧或从业者等因素 对检测或医疗管理选择的态度也是 关联的。 拟议的项目旨在审查与 BRCA1/2基因检测与患者医疗管理选择 在得知他们的测试结果后。与之前关于 患者进入基因检测研究方案或假设 测试选择，拟议的项目将研究患者的实际测试 和临床实践中的医疗管理决策，并将审查 从业者的态度在这些决定中的作用。调查人员将 通过采访接受BRCA1/2治疗的患者收集数据 测试，并通过问卷调查其从业者。主要目标 建议项目的主要内容是：1)确定健康特征 对BRCA1/2测试感兴趣或要求的护理从业者，以及 测试从业者专业的假设，对测试的态度， 和遗传咨询设施的使用是相关的，这些 变量会随着时间的推移而变化。2)检验患者吸收的假设 (决定测试或拒绝测试)BRAC1/2测试的 与患者的人口统计数据、患者知识和对 测试、实际和感知的风险因素、医生特征以及 知情同意程序的范围。3)研究 从业者特征在术后患者医疗管理决策中的作用 正在接受BRCA1测试。

DESCRIPTION (Adapted from the Investigator's Abstract): Tests for genes associated with familial breast and ovarian cancer (BRCA1 and BRCA2) have recently become available for clinical use, and could potentially be used by a large proportion of the general population. However, there is controversy about BRCA1/2 testing because of uncertainty about the predictive value of the tests, lack of data on efficacy of treatments or preventive measures for breast and ovarian cancer, concerns about the psychosocial impacts of testing, and a lack of knowledge about genetic testing among patients and health care providers. It is generally assumed that greater patient understanding of testing, through counseling and informed consent, will lead to a minimization of potential for inappropriate test use or poor medical or emotional outcomes as a result of testing. However, no studies to date have directly addressed whether patient understanding or extensive counseling services have any relationship with patient behavior, or whether other factors such as patient concerns about confidentiality, or practitioner attitudes towards testing or medical management options, are also associated. The proposed project is designed to examine factors associated with the uptake of BRCA1/2 genetic testing and patients' medical management choices after learning their test results. In contrast to previous research on patients entered in genetic testing research protocols or of hypothetical testing choices, the proposed project will study patients' actual testing and medical management decisions in clinical practice and will examine the role of practitioner attitudes in those decisions. The investigators will collect data through interviews with patients who are offered BRCA1/2 testing, and through questionnaires to their practitioners. The main goals of the proposed project are: 1) To determine the characteristics of health care practitioners who are interested in or request the BRCA1/2 test, and to test the hypothesis that practitioner specialty, attitudes toward testing, and use of genetic counseling facilities are associated, and that these variables change over time. 2) To test the hypothesis that patient uptake (decisions to be tested or refusal to be tested) of BRAC1/2 testing is associated with patient demographics, patient knowledge and concerns about testing, actual and perceived risk factors, physician characteristics, and the extent of the informed consent process. 3) To examine the role of practitioner characteristics in patient medical management decisions after receiving BRCA1 testing.