BRCA1/2 Education for Mothers and Their Teen Daughters

针对母亲及其青少年女儿的 BRCA1/2 教育

基本信息

批准号：
7116518
负责人：
BETH N PESHKIN
金额：
$ 7.58万
依托单位：
GEORGETOWN UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2005
资助国家：
美国
起止时间：
2005-09-01 至 2008-06-30
项目状态：
已结题

项目摘要

Thousands of women have been tested for BRCA1/2 mutations to determine whether they harbor an inherited susceptibility to breast and ovarian cancer. Social and behavioral research conducted with this population suggests that communication of positive test results among mutation carriers to their high-risk family members can be an emotional and difficult task. Though genetic counseling protocols recognize the importance of this behavior to help control the spread of hereditary cancer within the kinship, few patient education resources are available to assist in this process. Moreover, when the focus of the communication is to minor children, parents' needs and motivations are unique. Despite the fact that children are not eligible for testing until reaching age 18, our research suggests that approximately 50% of daughters are almost immediately informed about their mothers' carrier status. It would appear that mothers engage their daughters in these conversations without the benefit of expert guidance and outcomes from this exchange are unknown. When mothers do talk with their daughters about genetic testing it is an emotionally-charged or "hot" issue and mothers are receptive to assistance. The focus of this R03 application is on the development of patient educational resource booklets for mothers who carry BRCA1/2 mutations and their teenage daughters. This work will be performed in 2 phases over a 2 year period. In Phase I/Year 1, in-depth qualitative research interviews will be conducted with n=15 high-risk mother-daughter pairs. An advisory panel of experts drawn from medical oncology, pediatrics and adolescent medicine, behavioral science/psychology, and genetic counseling as well as consumers will also be convened to solicit their input on key issues and concepts germane to patient education in this area. Together, this will constitute a needs assessment. In Phase II/Year 2, all of the information gathered through Phase I will be used to create patient educational resource booklets to assist high-risk mothers and daughters in their conversations about hereditary breast/ovarian cancer and BRCA1/2 genetic testing. These resources will be pretested and then pilot tested for readability, acceptability, understandability, relevance, and sensitivity using conventional and well-standardized patient education resource evaluation methods and tools with an additional 30 high-risk mother-daughter pairs using a one-group, pre-post design (pre, 1 week post, and 1 month afterwards). It is expected that with respect to issues surrounding hereditary cancer susceptibility, the resource will result in improved knowledge, communication, and support among mothers and their teenage daughters.

数千名女性接受了 BRCA1/2 突变检测，以确定她们是否具有乳腺癌和卵巢癌的遗传易感性。对这一人群进行的社会和行为研究表明，突变携带者向其高风险家庭成员传达阳性检测结果可能是一项情绪化且困难的任务。尽管遗传咨询协议认识到这种行为对于帮助控制遗传性癌症在亲属内部传播的重要性，但很少有患者教育资源可以帮助这一过程。而且，当沟通的重点是未成年子女时，父母的需求和动机是独特的。尽管儿童要到 18 岁才有资格接受检测，但我们的研究表明，大约 50% 的女儿几乎立即得知其母亲的携带者状况。母亲们似乎在没有专家指导的情况下让女儿参与这些对话，而且这种交流的结果尚不清楚。当母亲与女儿谈论基因检测时，这是一个情绪激动或“热门”的问题，母亲们很乐意提供帮助。该 R03 应用程序的重点是为携带 BRCA1/2 突变的母亲及其十几岁的女儿开发患者教育资源手册。这项工作将在两年内分两个阶段进行。在第一阶段/第一年，将对 n=15 对高风险母女进行深入的定性研究访谈。还将召集一个由肿瘤内科、儿科和青少年医学、行为科学/心理学、遗传咨询以及消费者组成的专家顾问小组，就与该领域患者教育密切相关的关键问题和概念征求他们的意见。总之，这将构成需求评估。在第二阶段/第二年，通过第一阶段收集的所有信息将用于创建患者教育资源手册，以帮助高风险母亲和女儿谈论遗传性乳腺癌/卵巢癌和 BRCA1/2 基因检测。这些资源将经过预先测试，然后使用传统且标准化的患者教育资源评估方法和工具，使用一组、另外 30 对高风险母女对可读性、可接受性、可理解性、相关性和敏感性进行试点测试。事前事后设计（事前、事后1周、事后1个月）。预计关于遗传性癌症易感性问题，该资源将改善母亲及其十几岁的女儿之间的知识、沟通和支持。