Decision Making in Young Women at Risk for HBOC

描述（由申请人提供）：BRCA1 和/或 BRCA2 突变测试呈阳性的年轻女性在生命中的发育关键时期面临着潜在致命的遗传遗产。在得知自己患有遗传性乳腺癌和卵巢癌 (HBOC) 的高风险后，这些 35 岁以下的女性必须就自己的医疗保健做出决定。对于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。该年龄组包括在乳腺癌文献中被确定为“年轻”且在患有乳腺癌的女性群体中具有独特特征的成年女性群体。 本研究的目的是加深我们对发现自己处于 HBOC 高风险的年轻女性的健康行为决策的了解。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策。该研究的具体目的是： 1) 描述 35 岁以下女性针对阳性或模糊基因检测结果做出的健康行为决策模式； 2) 描述与健康行为决策相关的影响，这些影响对于有 HBOC 风险的年轻女性最为显着。一项针对 BRCA 突变测试呈阳性的年轻女性子集的初步研究发现了与人际关系、生育、缺乏该年龄段特有的治疗信息以及与同龄人不同的感觉相关的问题。 将使用扎根理论方法来增加对健康行为决策的理解。将通过对每位参与者的一到两次半结构化访谈来收集数据，并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。进一步了解这一特定人群健康行为决策的复杂性将是针对有 HBOC 风险的年轻女性制定心理社会干预措施的研究计划的第一步。

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.