Using Community-Engaged Methods to Design a Tool to Promote Informed Breast Cancer Screening Decisions for Low Literacy Women

项目总结 低健康素养(LHL)越来越被认为是癌症差异的重要驱动因素，鉴于 五分之一的美国人缺乏在我们的医疗保健系统中充分发挥作用所需的识字技能，这是 日益严重的公共卫生危机。患有LHL的成年人不太可能使用预防性服务，更不可能 接受癌症筛查，死亡率更高。乳房X光检查的决定，这越来越多 呼吁患者和医生共同决策，是沟通的典范 挑战最有可能影响LHL人群的结局。乳腺癌的明智决定 考虑个人患乳腺癌风险和患者偏好的筛查是 由专业指南推荐给40-54岁的女性，对她们来说筛查的危害可能超过 带来的好处。而据估计，乳房X光检查可以将女性乳腺癌死亡率降低15% 在40多岁的时候，年轻女性的筛查假阳性率很高(10年内有40%-60%)， 大量的过度诊断估计(筛查的人中有15%-48%)。数据一直表明， 关于乳房X光检查的沟通不足以让女性为这些结果做好准备 在做出筛查决定的女性中，普遍存在对乳房X光检查及其效用的误解。 虽然识字是接受乳房X光检查的一个众所周知的障碍，但目前还没有决策工具来帮助 患有LHL的女性与她们的决策。因此，这一培训和研究计划的目标是 开发必要的知识和技能，创建和测试一种新的决策辅助工具，以增加知情乳房 40-54岁患有LHL的女性的癌症筛查决定。培训将涵盖四个基本领域：1) 社区参与的研究方法；2)改善知情决策的工具；3)低识字率 人群；以及4)以患者为中心的结果评估。通过授课训练获得的知识 而一对一的指导将支持三个提出的研究目标。首先，我会接触多个 利益相关者，包括患有LHL的妇女(n=25)和她们的临床医生(n=20)，在定性访谈中 了解并描述他们的决策偏好，并确定最重要的结果。第二，我 将构建适合40-54岁LHL女性使用的多媒体决策辅助工具。专家小组 (n=10)将协助评估基于证据的内容纳入的可接受性，以及患有LHL的妇女 将通过认知访谈和调查(n=30)提供关于工具可接受性和试点结果的意见。第三，我 目的评估决策援助对决策结果的影响(决策冲突、知识、 共同决策)和筛查意向，通过对50名女性进行试验性的测试前/测试后研究 以及他们的初级保健提供者。这份工作将开启我作为一名独立调查员的职业生涯 设计和传播以患者为中心的决策支持，帮助优化癌症的交付 为LHL患者提供筛查服务。

PROJECT SUMMARY Low health literacy (LHL) is increasingly recognized as an important driver of cancer disparities, and given that one in five Americans lack the necessary literacy skills to function adequately in our health care system, this is a burgeoning public health crisis. Adults with LHL are less likely to use preventive services, less likely to undergo cancer screening, and have higher mortality. Mammography screening decisions, which increasingly call for shared-decision making between patient and physician, is an exemplar of where communication challenges are most likely to affect outcomes for LHL populations. Informed decisions for breast cancer screening that account for individual risk of developing breast cancer and patient preferences are recommended by professional guidelines for women aged 40-54 for whom the harms of screening can exceed the benefits. While mammography screening is estimated to reduce breast cancer mortality by 15% for women in their 40s, screening in younger women has high rates of false positives (40-60% over ten years) and substantial estimates of over-diagnosis (15-48% of those screened). Data consistently show that communication about mammography screening inadequately prepares women for these outcomes and there are widespread misperceptions about mammography and its utility among women making screening decisions. While literacy is a known barrier to receiving mammography, there are currently no decision tools to help women with LHL with their decision-making. Therefore, the goal of this training and research program is to develop the necessary knowledge and skills to create and test a novel decision aid to increase informed breast cancer screening decisions for women ages 40-54 with LHL. Training will cover four essential domains: 1) Community-Engaged Research Methods; 2) Tools to Improve Informed Decision-Making; 3) Low Literacy Populations; and 4) Patient-Centered Outcome Assessment. The knowledge gained through didactic training and one-on-one mentoring will support three proposed Research Aims. First, I will engage multiple stakeholders, including women with LHL (n=25) and their clinicians (n=20), in qualitative interviews to understand and characterize their decisional preferences and identify outcomes that matter most. Second, I will construct a multi-media decision aid appropriate for use with women with LHL ages 40-54. An expert panel (n=10) will assist in evaluating the acceptability of evidence based content for inclusion, and women with LHL will provide input on tool acceptability and pilot outcomes via cognitive interviews and a survey (n=30). Third, I aim to assess the impact of the decision aid on decision-making outcomes (decisional conflict, knowledge, shared decision-making) and screening intentions through a pilot pre-test/post-test study among 50 women and their primary care providers. This work will launch my career as an independent investigator trained to design and disseminate patient-centered decision supports that help to optimize the delivery of cancer screening services for those with LHL.