Preventing Breast Cancer: Decisions and Effects among Women at Elevated Risk

描述（由申请人提供）：八分之一的美国妇女在其一生中将被诊断患有乳腺癌，乳腺癌是美国所有种族妇女癌症死亡的两大原因之一。对于由于疾病家族史或BRCA 1或BRCA 2基因的某些突变而导致风险升高的女性，终生风险可能为60%或更高。已经开发了几种有效的生物医学机制来预防高风险女性的乳腺癌，但它们的使用频率远低于医学文献推荐的频率-有时是由不同的女性使用（Ozanne & Esserman 2010; Tuttle et al. 2010）。例如，不到1%的美国女性使用他莫昔芬进行化学预防，尽管超过15%的女性患有浸润性乳腺癌的风险升高，而他莫昔芬可将这种风险降低一半（Fisher et al. 1998; Freedman et al. 2003;沃茨et al. 2010）。只有五分之一的突变携带者选择双侧预防性乳房切除术， 这被认为是一种临床选择，但也有许多风险较低的女性接受，对她们来说，这不太可能降低风险（Friebel等人，2007; McLaughlin等人，2009; Tuttle等人，2010）。与此同时，人们不知道妇女为什么做出这样的选择，而且很明显，妇女很少得到系统的信息和支持，使她们能够做出完全符合自己偏好的、有教育意义的、保护健康的选择。我们在有效利用现有预防方法方面所欠缺的是，我们不了解妇女在得知其风险升高和选择预防行动之间的决策过程。如果没有这种联系，我们就不知道：（a）妇女如何在现有的预防途径中作出决定;（B）她们在多大程度上能够执行反映准确知识和自身偏好的选择;（c）哪些动机、互动和制约因素最有力地影响了她们的选择;（d）决策的特点如何影响身心健康;或（e）这些动态如何在由种族-民族、社会经济地位和乳腺癌风险严重程度定义的亚组中变化。拟议中的K 01研究将是第一个从白色和非洲裔美国妇女的个人账户开始的高风险研究，并跟踪他们导航所有潜在预防行为的途径的全方位动态。通过揭示妇女的决策过程及其影响，该项目将阐明可修改的目标点，以便采取有针对性的决策支助干预措施。这种干预措施可以通过提供高质量的信息、互动和支持，增强妇女的权能，使她们能够执行反映自身偏好的健康保护决定。该项目还将通过支持决策产生重大的公共卫生影响，从而导致更好的身体和心理健康结果，以及更具有成本效益地使用生物医学风险降低机制。这项拟议的研究是研究议程的第一阶段，旨在了解和支持妇女在乳腺癌预防领域的决策。它将探讨妇女审议和决定各种预防选择的过程、她们因此而作出的选择，以及预防选择和先前的决策过程对妇女身心健康的影响。为了实现这些目标，它将利用K 01期间收集的原始数据。将采用深入的半结构化访谈，以彻底了解妇女的决策过程，并就影响预防选择的关键决策因素以及决策因素和预防行为选择对健康的影响提出具体假设。原始调查数据将用于检验这些假设。NCI指导研究科学家发展奖的申请，以促进多样性，还提出了必要的候选人建立新的实质性和方法论的专业知识，她将需要进行创新的拟议研究的结构化培训计划。该K 01将建立在候选人在医学社会学和定性健康研究方面的现有专业知识的基础上，通过在癌症预防和癌症健康差异，决策科学，生物统计分析的先进方法以及干预措施的设计方面的正式培训和指导来支持患者决策。高素质的导师和顾问团队来自公共卫生，护理，乳腺外科，临床遗传学和生物统计学领域，反映了强有力的多学科方法，以支持乳腺癌高风险妇女的复杂预防决策。总之，这K 01将通过调查妇女预防选择的原因和影响，填补我们对乳腺癌预防的理解的关键空白，并将包括必要的培训和研究经验，以建立候选人作为癌症预防，健康差异，决策科学和干预研究领域的独立调查员。

DESCRIPTION (provided by applicant): One in eight U.S. women will be diagnosed with breast cancer in her lifetime, and breast cancer is one of the top two causes of cancer death among U.S. women in all racial categories. For women at elevated risk due to strong family history of the disease or certain mutations of the BRCA1 or BRCA2 genes, lifetime risk can be 60% or higher. Several effective biomedical mechanisms have been developed to prevent breast cancer among women at elevated risk, but they are utilized far less frequently - and sometimes by different women - than the medical literature would recommend (Ozanne & Esserman 2010; Tuttle et al. 2010). Fewer than 1% of U.S. women use tamoxifen for chemoprevention, for instance, even though over 15% are at elevated risk for invasive breast cancer and tamoxifen reduces this risk by half (Fisher et al. 1998; Freedman et al. 2003; Waters et al. 2010). Bilateral prophylactic mastectomy is chosen by only a fifth of mutation carriers, for whom it is considered a clinical option, but is also undergone by many women at lower levels of risk, for whom it is unlikely to reduce risk (Friebel et al. 2007; McLaughlin et al. 2009; Tuttle e al. 2010). It is simultaneously unknown why women make the choices they do, and evident that women rarely receive the systematic information and support that would allow them to make educated, health-protective choices fully aligned with their own preferences. Missing from our ability to effectively leverage available methods of prevention is an understanding of the decision-making processes women utilize in the time between learning that their risk is elevated and choosing a course of preventive action. Absent this link, we do not know (a) how women decide among the prevention pathways available; (b) to what degree they are able to implement choices that reflect accurate knowledge and their own preferences; (c) what motivations, interactions, and constraints most forcefully shape their choices; (d) how the features of decision-making affect physical and psychosocial health; or (e) how these dynamics vary across sub-groups defined by race-ethnicity, socioeconomic status, and severity of breast cancer risk. The proposed K01 research will be the first to start from the personal accounts of White and African American women at elevated risk, and trace the full range of dynamics by which they navigate pathways to all potential prevention behaviors. By revealing women's decision-making processes and their effects, this project will illuminate modifiable target points for tailored decision support interventions. Such interventions can empower women to implement health-protective decisions that reflect their own preferences by providing high quality information, interaction, and support. The project will also generate significant public health impact by supporting decision making that leads to better physical and psychosocial health outcomes, and more cost- effective use of biomedical risk-reduction mechanisms. The proposed study is the first stage of a research agenda to understand and support women's decision making in the area of breast cancer prevention. It will explore the processes through which women deliberate and decide among their prevention options, the choices they make as a result, and the effects of not only prevention choices but also the preceding decision-making processes on women's physical and psychosocial well-being. To achieve these goals, it will utilize original data to be collected during the K01. In-depth, semi- structured interviews will be used to generate a thorough understanding of women's decision-making processes, and to generate specific hypotheses about the key decision-making factors that shape prevention choices, and the effects of both decision-making factors and prevention behavior choices on health. Original survey data will be used to test these hypotheses. This application for the NCI Mentored Research Scientist Development Award to Promote Diversity also proposes a structured program of training necessary for the candidate to build the new substantive and methodological proficiencies she will require to undertake the innovative proposed research. This K01 will build on the candidate's existing expertise in medical sociology and qualitative health research through formal training and mentoring in cancer prevention and cancer health disparities, decision science, advanced methods of biostatistical analysis, and the design of interventions to support patient decision making. The highly qualified team of mentors and consultants come from the fields of public health, nursing, breast surgery, clinical genetics, and biostatistics, reflecting a strong multi-disciplinary approach to supporting the complex prevention decisions of women at elevated risk for breast cancer. In sum, this K01 will fill a critical gap in our understanding of breast cancer prevention by investigating the causes and effects of women's prevention choices, and will include the training and research experience necessary to establish the candidate as an independent investigator in the areas of cancer prevention, health disparities, decision science, and intervention research.