Decision Making in Young Women at Risk for HBOC

描述(由申请人提供)：BRCA1和/或BRCA2突变检测呈阳性的年轻女性在生命中的发育关键时刻面临潜在的致命遗传。在得知自己有患遗传性乳腺癌和卵巢癌(HBOC)的高风险后，这些35岁的女性必须对自己的医疗保健做出决定。对这一特定人群的健康行为决策知之甚少。研究样本将包括35-45名年龄在18-35岁之间的女性。这一年龄组包括在乳腺癌文献中被确定为“年轻”的成年妇女人口，并且在乳腺癌妇女人口中具有独特的特征。 这项研究的目的是增加我们对年轻女性健康行为决策的理解，她们发现自己处于HBOC的高危状态。这项研究将描述接收遗传风险信息如何影响有关实际健康行为的决定。这项研究的具体目的是：1)描述35岁女性在基因检测阳性或不明确的情况下对健康行为的决策模式；2)描述与健康行为决策相关的影响，这些影响对处于HBOC风险中的年轻女性最为显著。对BRCA突变检测呈阳性的一组年轻女性进行的初步研究发现，这些问题与人际关系、生殖、缺乏针对这个年龄段的治疗信息以及感觉与同龄人不同有关。 将使用扎根的理论方法来增加对健康行为决策的理解。数据将在与每个参与者的一到两次半结构化访谈中收集，并将使用不断比较的方法进行分析。与特定健康行为决策相关的决策模式和影响的描述将基于研究参与者的经验。增加对这一特定人群健康行为决策的复杂性的了解，将是针对HBOC高危年轻女性开发心理社会干预研究计划的第一步。

DESCRIPTION (provided by applicant): Young women with a positive BRCA1 and/or BRCA2 mutation test face a potentially deadly genetic legacy at a developmental critical time in their lives. After learning they are at a high risk for hereditary breast and ovarian cancer (HBOC) these women <35 years old must make decisions about their health care. Little is known about health behavior decision making in this specific population. The study sample will consist of 35- 45 women between the ages of 18-35 years. This age group comprises the adult population of women identified in the breast cancer literature as "young" and having unique characteristics within the population of women with breast cancer. The purpose of this study is to increase our understanding of the health behavior decision making of young women who discover they are at high risk for HBOC. This study will describe how receiving genetic risk information affects decisions about actual health behaviors. The specific aims of the study are to: 1) To describe patterns of decision making about health behaviors in women <35 years in response to a positive or ambiguous genetic test result; and 2) To describe influences associated with health behavior decision making that are most salient to young women at risk for HBOC. A preliminary study with a subset of young women with a positive BRCA mutation test identified issues related to relationships, reproduction, a lack of treatment information specific to this age group and feelings of being different from peers. Grounded theory method will be used to increase understanding of health behavior decision making. Data will be collected in one to two semi-structured interviews with each participant and will be analyzed using the constant comparative method. Descriptions of patterns of decision making and influences associated with particular health behavior decisions will be based on the research participants' experiences. Increased understanding of the complexities of health behavior decision making in this specific population will be the first step in a research program to develop psychosocial interventions directed at young women at risk for HBOC.