INTERACTIVE DECISION AID FOR BRCA 1/2 MUTATION CARRIERS

BRCA 1/2 突变携带者的交互式决策辅助

• 批准号: 2884575
• 负责人: Marc D Schwartz
• 金额: $ 38.53万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1999
• 资助国家: 美国
• 起止时间: 1999-09-15 至 2004-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/2884575
• 关键词: DVD /CD ROM; behavioral /social science research tag; brca gene; breast surgery; cancer risk; clinical research; clinical trials; computer assisted medical decision making; computer system design /evaluation; female; gene mutation; genetic carriers; genetic counseling; genetic screening; human subject; interactive multimedia; mammography; preference

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.

描述（根据调查员的摘要进行了改编）：自鉴定以来 BRCA1和BRCA2乳腺癌易感基因，基因检测具有 变得越来越普遍。继承BRCA1/2突变的女性有一个 55-85％的乳腺癌风险。主要的医疗决定 面对这些女性是是否要进行预防性乳房切除术（乳房 删除）或接受年度乳房X线照片。因为有限的数据有利于之一 这些选择或其他选择，妇女被告知有关收益和 每个人的限制，并被咨询以选择与他们的选项一致的选项 个人喜好和价值观。虽然是手术的具体建议 通常不是进行监视与监视，不选举的BRCA1/2载体 建议手术获得年度乳房X线照片。鉴于缺乏清晰的 指南，据报道医疗决策是 获得积极的最具挑战性和压力的后果之一 BRCA1/2基因测试结果，许多载体无法采用任何一种选项。 该项目的目的是开发和评估基于CD-ROM的交互式 最近获得阳性BRCA1/2基因测试的女性的决策AID 结果。我们提出了BRCA1和BRCA2突变载体之间的随机试验 其中我们将将标准遗传咨询（SGC）与增强 由个性化决策AID组成的遗传咨询条件 （IDA）与标准遗传咨询结合使用。艾达（Ida）会 部分基于主观的预期效用理论。公用事业理论 建议在做出选择时，人们选择最大化的选项 积极的结果并最大程度地减少负面结果。个人的价值 特定健康结果的位置称为她的偏爱或 公用事业。在其他医学背景下决策的文献表明 由公用事业理论指导的决策援助干预措施可以促进知情 决策并增强心理健康。如果有效，IDA可以 很容易被全国各地的BRCA1/2载体传播并适应 与其他人群一起使用，该人群遗传癌症风险。