Development of Family1st-An interactive web-based tool with evidence-based approaches to communicate hereditary cancer risk to at risk relatives and promote cascade testing.

Family1st 的开发 - 一种基于网络的交互式工具，采用基于证据的方法向高危亲属传达遗传性癌症风险并促进级联测试。

• 批准号: 10508426
• 负责人: Stacy W. Gray
• 金额: $ 47.69万
• 依托单位: BECKMAN RESEARCH INSTITUTE/CITY OF HOPE
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-19 至 2024-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10508426
• 关键词: Address; Adult; Behavioral; Belief; Cancer Control; Cancer Family; Caring; Cities; Clinical; Clinical Trials; Communication; Community Practice; Community of Practice; Cultural Backgrounds; Data; Development; Early Diagnosis; Electronic Mail; Elements; Ensure; Failure; Family; Family Cancer History; Family member; Feasibility Studies; First Degree Relative; Fright; Funding Opportunities; Future; Genetic; Genetic Counseling; Genetic Risk; Genetic Services; Geography; Goals; Hereditary Malignant Neoplasm; Home; Individual; Internet; Intervention; Malignant Neoplasms; Multimedia; Oncology; Outcome; Participant; Pathogenicity; Patients; Pilot Projects; Positioning Attribute; Process; Provider; Publishing; Randomized Clinical Trials; Relative Risks; Reporting; Research; Resources; Risk; Science; Secure; Sum; Surveys; Test Result; Testing; Translating; Underrepresented Minority; United States; Variant; Work; acceptability and feasibility; base; cancer care; cancer genetics; cancer genomics; cancer prevention; cancer risk; clinical trial readiness; cohort; communication behavior; design; eHealth; empowered; ethnic minority; evidence base; experience; genetic testing; handheld mobile device; health communication; health disparity; improved; interest; new technology; novel; patient oriented; pilot test; practice setting; programs; racial minority; randomized trial; risk variant; role model; success; tailored messaging; theories; therapy development; tool; treatment as usual; treatment optimization; underserved community; uptake; web-based tool

PROJECT SUMMARY/ABSTRACT Genetic testing has transformed cancer care. Providers use genetic testing results to optimize treatment and improve early detection. The benefits of genetic testing, however, are incompletely realized because of communication failures within families. Across multiple studies it has been shown that patients infrequently inform family members about genetic test results that reveal pathogenic or likely pathogenic findings, particularly in the community practice setting. Because of this lack of communication, family members are unable to get genetic testing to further elucidate their own risk and receive relevant risk reducing care. Further, because there are profound inequities in the availability of genetic services among underrepresented racial and ethnic minorities, effective communication within families from different cultural backgrounds will be an essential step to overcoming these genetic disparities. We will address these profound gaps in genetic care and communication by developing and pilot testing a multi-level e-health intervention to improve family communication of hereditary cancer risks. In the proposed work we integrate communication science and behavioral theory to develop a patient and family focused multi- level intervention to facilitate genetic risk communication (patient) and cascade testing (family) (Aim 1). For Aim 1, we will engage patients, family members, and providers in an iterative process of development and user testing. Our intervention will be developed in both Spanish and English and will be created on an e-Health Platform that our team has specifically designed for genetic risk communication. We will then evaluate the feasibility and acceptability of the intervention in a pilot study in underserved practice settings (Aim 2). Our overarching hypothesis is that a greater proportion of patients who use the intervention as compared to usual care, will communicate cancer risk information to family members and that family members who use the intervention will be more likely to get genetic testing. We will conduct our trial in the context of the City of Hope Community of Practice, which draws from providers who deliver cancer genetic care to underserved patients in myriad clinical settings across all 50 states (N=577). This research program will have high impact if successful as it will yield a scalable, state-of-the-art e-health intervention to improve family communication of hereditary cancer risk that will be evaluated in a future randomized trial. Identification of large numbers of patients with cancer risk variants through the City of Hope Community of Practice and the expressed need and interest of this cohort of providers ensures study feasibility. With expertise in cancer genetics, communication, intervention development, and clinical trials, our team is ideally positioned to achieve the proposed work. In sum, Family1st will meet a critical need in cancer genetics care by providing an evidence-based, patient- centered intervention to optimize the communication of hereditary cancer risk within families.

项目摘要/摘要 基因测试改变了癌症护理。提供者使用基因检测结果来优化治疗和 改善早期检测。但是，基因检测的好处是由于 家庭内部的沟通失败。在多项研究中，已经表明患者很少 告知家庭成员的遗传测试结果，这些结果揭示了致病性或可能的致病结果， 特别是在社区实践环境中。由于缺乏沟通，家庭成员是 无法获得基因检测以进一步阐明自己的风险并获得相关的降低护理风险。更远， 因为在代表性不足的种族和遗传服务中存在严重的不平等和 少数民族，来自不同文化背景家庭内部的有效沟通将是一个 克服这些遗传差异的重要步骤。 我们将通过开发和试点测试来解决遗传护理和沟通方面的这些巨大差距 多层电子卫生干预措施，以改善遗传性癌症风险的家庭交流。在提议中 工作我们整合了沟通科学和行为理论，以发展患者和家庭的集中多数 水平干预以促进遗传风险交流（患者）和级联测试（家庭）（AIM 1）。为了 AIM 1，我们将与患者，家庭成员和提供者一起参与开发和用户的迭代过程 测试。我们的干预措施将以西班牙语和英语开发，并将在电子健康上创建 我们团队专门为遗传风险交流而设计的平台。然后我们将评估 在服务不足的练习环境中，干预措施的可行性和可接受性（AIM 2）。我们的 总体假设是，与往常相比，使用干预措施的患者比例更大 护理，将向家庭成员和使用的家庭成员传达癌症风险信息 干预更有可能进行基因检测。我们将在希望之城进行审判 实践社区，从提供者那里汲取了向服务不足的患者提供癌症遗传护理的提供者 所有50个州的无数临床环境（n = 577）。如果成功，该研究计划将产生很大的影响 因为它将产生可扩展的最先进的电子健康干预措施，以改善遗传的家庭交流 将来的随机试验将评估癌症风险。确定大量患者 癌症风险的变体通过希望之城实践社区以及表达的需求和兴趣 这个提供者的同类可确保研究可行性。具有癌症遗传学，交流的专业知识， 干预开发和临床试验，我们的团队在理想情况下可以实现拟议的工作。在 总之，Family1st将通过提供基于证据的患者 - 集中干预以优化家庭中遗传性癌症风险的交流。