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

• 批准号: 6955438
• 负责人: BETH N PESHKIN
• 金额: $ 7.76万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2005
• 资助国家: 美国
• 起止时间: 2005-09-01 至 2007-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6955438
• 关键词: adolescence (12-20); brca gene; breast neoplasms; cancer risk; clinical research; communication behavior; education evaluation /planning; educational resource design /development; gene mutation; genetic carriers; genetic counseling; genetic disorder diagnosis; genetic screening; genetic susceptibility; health education; human subject; interview; mother child interaction; neoplasm /cancer genetics; ovary neoplasms; psychological shock; adolescence (12-20); brca gene; breast neoplasms; cancer risk; clinical research; communication behavior; education evaluation /planning; educational resource design /development; gene mutation; genetic carriers; genetic counseling; genetic disorder diagnosis; genetic screening; genetic susceptibility; health education; human subject; interview; mother child interaction; neoplasm /cancer genetics; ovary neoplasms; psychological shock

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.

已经对成千上万的妇女进行了BRCA1/2突变测试，以确定她们是否具有对乳腺癌和卵巢癌的遗传敏感性。与该人群进行的社会和行为研究表明，突变携带者之间的积极测试结果与高风险家庭成员之间的交流可能是一项情感和艰巨的任务。尽管遗传咨询方案认识到这种行为对于帮助控制遗传癌在亲属关系中的传播的重要性，但很少有患者教育资源可以帮助这一过程。此外，当交流的重点是未成年子女时，父母的需求和动机是独一无二的。尽管孩子在18岁之前才有资格进行测试，但我们的研究表明，大约有50％的女儿几乎立即将其母亲的载体状况告知。看来，母亲在这些对话中与女儿互动，而没有专家指导的好处，而这种交流的结果是未知的。当母亲确实与女儿谈论基因测试时，这是一个充满情感的或“热门”的问题，母亲可以接受援助。该R03应用的重点是为携带BRCA1/2突变及其青少年女儿的母亲的患者教育资源手册的发展。这项工作将在2年内以2个阶段进行。在第一阶段/年级中，将通过n = 15个高风险的母女对进行深入的定性研究访谈。还将召集一个由医学肿瘤学，儿科和青少年医学，行为科学/心理学以及遗传咨询以及消费者的专家咨询小组，也将召集，以征求他们对这一领域患者教育的关键问题和概念的投入。一起，这将构成需求评估。在第二阶段/第二阶段，所有阶段收集的信息都将用于创建患者教育资源手册，以帮助高危母亲和女儿就遗传性乳腺/卵巢癌和BRCA1/2基因测试进行对话。这些资源将进行测试，然后使用常规和标准化的患者教育资源评估方法和工具进行预测试，以获取可读性，可接受性，可理解性，相关性和敏感性，并使用一组，前，前，1周后和后1个月，使用30个高风险的母女对配对。可以预期，关于围绕遗传性癌症易感性的问题，资源将改善母亲及其少年女儿的知识，沟通和支持。