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

使用社区参与的方法设计一个工具，以促进低识字率妇女做出知情的乳腺癌筛查决策

• 批准号: 9981682
• 负责人: Christine Marie Gunn
• 金额: $ 12.84万
• 依托单位: BOSTON MEDICAL CENTER
• 依托单位国家: 美国
• 财政年份: 2018
• 资助国家: 美国
• 起止时间: 2018-08-01 至 2023-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9981682
• 关键词: Address; Adult; Affect; Age; American; Anxiety; Benefits and Risks; Breast Cancer Detection; Breast Cancer Patient; Breast Cancer Risk Factor; Caring; Communication; Communities; Complex; Conflict (Psychology); Consensus; Data; Decision Aid; Decision Making; Diagnosis; Fostering; Goals; Guidelines; Harm Reduction; Healthcare; Healthcare Systems; High Risk Woman; Individual; Information Literacy; Interview; Knowledge; Lead; Low Literacy Population; Malignant Neoplasms; Mammographic screening; Mammography; Mediating; Mentors; Methods; Multimedia; Outcome; Outcome Assessment; Patient Preferences; Patient-Focused Outcomes; Patients; Perception; Physicians; Population; Pre-Post Tests; Preventive service; Probability; Public Health; Quality of life; Research; Research Design; Research Methodology; Risk; Screening for cancer; Services; Societies; Suggestion; Surveys; Testing; Training; Uncertainty; Woman; Work; aged; cancer health disparity; care providers; career; cognitive interview; design; evidence base; experience; health literacy; improved; informant; investigator training; literacy; malignant breast neoplasm; mortality; mortality disparity; novel; patient oriented; precision medicine; preference; primary outcome; programs; screening; screening disparities; screening guidelines; shared decision making; skills; tool; young woman

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.

项目摘要 健康素养低（LHL）越来越被认为是癌症差异的重要驱动因素， 五分之一的美国人缺乏必要的识字技能，无法在我们的医疗保健系统中充分发挥作用， 一场迅速发展的公共卫生危机成年LHL患者不太可能使用预防服务， 接受癌症筛查，死亡率更高。乳房X光检查的决定， 呼吁病人和医生之间的共同决策，是沟通的典范， 挑战最有可能影响LHL人群的结果。乳腺癌的诊断 考虑个体患乳腺癌风险和患者偏好的筛查， 专业指南推荐的40-54岁的女性，筛查的危害可能超过 好处据估计，乳房X光检查可使女性乳腺癌死亡率降低15 在40多岁时，年轻女性的筛查假阳性率很高（10年内为40-60%）， 过度诊断的实质性估计（筛查的15-48%）。数据一致表明， 关于乳房X光检查筛查的宣传没有为妇女做好充分的准备， 在做筛查决定的妇女中，对乳房X光检查及其效用存在广泛的误解。 虽然识字是接受乳房X光检查的一个已知障碍，但目前没有决策工具可以提供帮助 女性LHL与他们的决策。因此，这项培训和研究计划的目标是 开发必要的知识和技能，以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LHL女性的癌症筛查决定。培训将涵盖四个主要领域： 2）改善知情决策的工具; 3）识字率低 人群;和4）以患者为中心的结果评估。通过教学培训获得的知识 一对一的指导将支持三个拟议的研究目标。首先，我会让多个 利益相关者，包括LHL女性（n=25）及其临床医生（n=20），在定性访谈中， 了解和描述他们的决策偏好，并确定最重要的结果。二我 将建立一个多媒体决策援助适用于妇女与LHL年龄40-54。一个专家小组 （n=10）将有助于评价纳入的循证内容的可接受性，以及LHL女性 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输入。三我 旨在评估决策辅助对决策结果的影响（决策冲突，知识， 共同决策）和通过50名妇女的试验性前测/后测研究筛选意向 和他们的初级保健提供者。这项工作将启动我的职业生涯作为一个独立的调查员训练， 设计和传播以患者为中心的决策支持，帮助优化癌症治疗 为LHL患者提供筛查服务。