LIFEPATH--GENETIC COUNSELING TOOL FOR BREAST CANCER

描述：有强烈的乳腺癌家族史的女性，遗传了BRCA1和BRCA2基因突变，患乳腺癌的风险为85-90%，通常年龄比预期的要小。然而，绝大多数有乳腺癌家族史的女性患乳腺癌的风险远低于90%。事实上，大多数有乳腺癌家族史的女性，如果只有一个受影响的一级亲属，不太可能携带BRCA1或BRCA2突变。因此，这些妇女不适合进行基因检测或咨询。尽管大多数有乳腺癌家族史的女性不太可能携带BRCA1或BRCA2突变，但研究表明，这一群体对获得基因检测非常感兴趣。特别值得关注的是，对测试的高需求可能会超过现有的咨询资源。有证据表明，对检测的需求可能是由于对检测的益处、风险和局限性缺乏知识和误解所致。由于预期的高需求和有限的咨询资源，需要一种教育工具来促进知情决策。我们建议测试一种基于互联网的教育工具的应用，作为一种干预手段，帮助有乳腺癌家族史的妇女在症状前基因检测方面做出明智的决定。预期的结果是提高风险理解和减少与遗传性乳腺癌相关的心理困扰。为了理解这些女性中夸大的风险感知，我们需要了解女性如何处理和解释风险信息。因此，实验计划包括基于监控过程模型的程序用户认知信息（应对）方式的研究。我们不仅要考虑注意力的方式，还要考虑妇女处理和解释风险信息的方式，因为我们开发了干预措施，努力有效地利用互联网作为一种教育工具。这将使我们最终能够根据个人在第二阶段的注意力风格来定制信息。

DESCRIPTION: Women with a strong family history of breast cancer who have inherited a mutation in genes known as BRCA1 and BRCA2 have an 85-90% risk of developing breast cancer, often at ages younger than expected. However, the vast majority of women who have a family history of breast cancer have a risk much lower than 90%. In fact, most women with a family history of breast cancer who have only a single affected first-degree relative are unlikely to carry a BRCA1 or BRCA2 mutation. Consequently, these women are not appropriate candidates for genetic testing or counseling. Despite the fact that most women with a family history of breast cancer are not likely to carry a BRCA1 or BRCA2 mutation, studies show that this group is extremely interested in obtaining genetic testing. Of particular concern is the possibility that high demand for testing may exceed available counseling resources. Evidence suggests that demand for testing may be driven by lack of knowledge and misconceptions about the benefits, risks, and limitations of testing. Because of the anticipated high demand and limited counseling resources, there is a need for an educational tool to facilitate informed decision making. We propose to test the application of an Internet-based educational tool as an intervention for helping women with a family history of breast cancer make informed decisions about presymptomatic genetic testing. The expected outcome is improved risk comprehension and reduced psychological distress relative to hereditary breast cancer. In order to understand the exaggerated risk perception among these women, we need to understand how women process and interpret risk information. Thus the experimental plan includes a study of the cognitive informational (coping) styles of program users based on the Monitoring Process Model. We will consider not only attentional style, but also the ways in which women process and interpret risk information as we develop our intervention in an effort to make effective use of the Internet as an educational tool. This will allow us to ultimately tailor information based on an individual's attentional style in Phase II.