Decision Making in Young Women at Risk for HBOC

描述（由申请人提供）：BRCA 1和/或BRCA 2突变检测呈阳性的年轻女性在其生命中的发育关键时期面临着潜在的致命遗传遗产。在了解到她们患有遗传性乳腺癌和卵巢癌（HBOC）的高风险后，这些35岁以下的妇女必须对她们的医疗保健做出决定。人们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岁之间的妇女。该年龄组包括乳腺癌文献中确定为“年轻”的成年女性人群，在乳腺癌女性人群中具有独特特征。 本研究的目的是增加我们对发现自己处于HBOC高风险中的年轻女性的健康行为决策的理解。这项研究将描述如何接收遗传风险信息影响有关实际健康行为的决定。该研究的具体目的是：1）描述35岁以下女性对阳性或模棱两可的基因检测结果的健康行为决策模式; 2）描述与健康行为决策相关的影响，这些影响对有HBOC风险的年轻女性最为突出。一项对BRCA突变检测呈阳性的年轻女性子集的初步研究发现了与关系，生殖，缺乏该年龄组特定的治疗信息以及与同龄人不同的感觉有关的问题。 扎根理论方法将用于增加对健康行为决策的理解。数据将通过对每位参与者的一到两次半结构化访谈收集，并将使用持续比较方法进行分析。对决策模式和与特定健康行为决策相关的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复杂性的理解将是研究计划的第一步，该计划旨在针对有HBOC风险的年轻女性制定心理社会干预措施。

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.