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: 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
• 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
• 来源: https://reporter.nih.gov/project-details/7116518
• 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

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，将突变携带者的阳性检测结果传达给他们的高风险家庭成员可能是一项情绪化和困难的任务。虽然遗传咨询协议认识到这种行为的重要性，以帮助控制遗传性癌症在亲属关系内的传播，很少有患者教育资源可用于协助这一过程。此外，当沟通的焦点是未成年子女时，父母的需求和动机是独特的。尽管事实上，孩子们直到18岁才有资格进行检测，但我们的研究表明，大约50%的女儿几乎立即被告知母亲的携带状况。似乎母亲在没有专家指导的情况下与女儿进行这些对话，这种交流的结果也不得而知。当母亲和女儿谈论基因检测时，这是一个充满情感或“热点”的问题，母亲们乐于接受帮助。这项R03申请的重点是为携带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2年的时间内分2个阶段进行。在第一阶段/第一年，将对n=15对高危母女进行深入的定性研究访谈。来自肿瘤学医学、儿科和青少年医学、行为科学/心理学、遗传咨询以及消费者的专家咨询小组也将被召集起来，征求他们对这一领域中与患者教育相关的关键问题和概念的意见。总之，这将构成一项需求评估。在II期/第2年，通过I期收集的所有信息将用于创建患者教育资源小册子，以帮助高危母亲和女儿讨论遗传性乳腺癌/卵巢癌和BRCA1/2基因检测。将对这些资源进行预测试，然后使用常规的和标准化的患者教育资源评估方法和工具，对另外30对高危母女进行可读性、可接受性、可理解性、相关性和敏感性的试点测试，采用单组、事后设计（事后、事后1周和事后1个月）。预计，在遗传癌症易感性问题方面，该资源将改善母亲及其十几岁女儿之间的知识、交流和支持。