INTERACTIVE DECISION AID FOR BRCA 1/2 MUTATION CARRIERS

描述（改编自研究者摘要）：自确定 BRCA 1和BRCA 2乳腺癌易感基因，基因检测 变得越来越普遍。遗传BRCA 1/2突变的女性， 55- 85%的终生乳腺癌风险。主要医疗决策 这些妇女面临的问题是是否要进行预防性乳房切除术（乳房 或每年接受乳房X光检查。因为有限的数据有利于 无论是这些选择还是其他选择，妇女都被告知这些好处， 每个人的局限性，并建议选择符合他们的选择 个人偏好和价值观。虽然手术的具体建议 与监测，一般不进行，BRCA 1/2携带者谁不选择 建议每年进行乳房X光检查。由于缺乏明确的 根据指南，据报道，医疗决策 接受积极的治疗最具挑战性和压力的后果之一， BRCA 1/2基因检测结果，许多携带者未能采取任何一种选择。 本项目的目标是开发和评估一个基于CD-ROM的交互式 为最近接受BRCA 1/2阳性基因检测的女性提供决策援助 结果.我们建议在BRCA 1和BRCA 2突变携带者中进行随机试验 在其中，我们将比较标准遗传咨询（SGC）和增强型 遗传咨询条件，包括个性化的决策援助 (IDA)与标准遗传咨询一起提供。IDA将 主观期望效用理论（Subjective Expected Utility Theory）效用理论 表明，在做选择时，人们选择最大化的选项， 积极的结果，尽量减少消极的结果。一个人的价值 对特定健康结果的位置被称为她的偏好或 效用关于其他医学背景下决策的文献表明， 以效用理论为指导的决策辅助干预可以促进知情 决策和增强心理健康。如果有效，IDA可以 易于传播到全国各地的BRCA 1/2运营商，并适用于 用于其他具有遗传癌症风险的人群。

DESCRIPTION (adapted from investigator's abstract): Since the identification of the BRCA1 and BRCA2 breast cancer susceptibility genes, genetic testing has become increasingly widespread. Women who inherit a BRCA1/2 mutation have a 55-85 percent lifetime risk of breast cancer. The primary medical decision facing these women is whether to have a prophylactic mastectomy (breast removal) or to receive yearly mammograms. Because limited data favor one of these options or the other, women are informed about the benefits and limitations of each and counseled to select an option consistent with their personal preference and values. Although a specific recommendation for surgery versus surveillance is not generally made, BRCA1/2 carriers who do not elect surgery are advised to obtain annual mammograms. Given the lack of clear guidelines, it is not surprising that medical decision-making is reported to be one of the most challenging and stressful consequences of receiving a positive BRCA1/2 gene test result, and many carriers fail to adopt either option. The goal of this project is to develop and evaluate an interactive CD-ROM-based decision-aid for women who have recently received a positive BRCA1/2 gene test result. We propose a randomized trial among BRCA1 and BRCA2 mutation carriers in which we will compare standard genetic counseling (SGC) to an enhanced genetic counseling condition that consists of the individualized decision-aid (IDA) delivered in conjunction with standard genetic counseling. The IDA will be based, in part, on Subjective Expected Utility theory. Utility theory suggests that in making choices, people select the option that maximizes positive outcomes and minimizes negative outcomes. The value that an individual places on a particular health outcome is referred to as her preference or utility. Literature on decision-making in other medical contexts suggests that decision-aid interventions guided by Utility theory can promote informed decision-making and enhance psychological well being. If effective, the IDA can easily be disseminated to BRCA1/2 carriers across the country and adapted for use with other populations with inherited risk for cancer.