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.

项目总结/摘要 基因检测改变了癌症治疗。提供者使用基因检测结果来优化治疗， 改善早期检测。然而，基因检测的好处并没有完全实现，因为 家庭内部的沟通障碍。多项研究表明，患者很少 向家庭成员通报揭示致病或可能致病结果的基因检测结果， 特别是在社区实践中。由于缺乏沟通，家庭成员 无法进行基因检测以进一步阐明自身的风险并接受相关的降低风险护理。此外，本发明还 因为在代表性不足的种族和民族之间， 对于少数族裔而言，来自不同文化背景的家庭之间的有效沟通将是一个 克服这些遗传差异的关键步骤。 我们将通过开发和试点测试一种新的基因治疗方法， 多层次的电子健康干预，以改善遗传性癌症风险的家庭沟通。拟议 我们的工作是整合沟通科学和行为理论，开发一个以病人和家庭为中心的多功能， 一级干预，以促进遗传风险沟通（患者）和级联检测（家庭）（目标1）。为 目标1，我们将使患者、家庭成员和提供者参与到开发和用户交互的过程中。 试验.我们的干预措施将在西班牙语和英语两种语言中开发，并将在电子健康平台上创建。 我们的团队专门为遗传风险沟通设计的平台。然后我们将评估 在服务不足的实践环境中进行的试点研究中干预措施的可行性和可接受性（目标2）。我们 总体假设是，与通常情况相比，使用干预措施的患者比例更大 护理，将癌症风险信息传达给家庭成员和使用 干预将更有可能得到基因检测。我们将在希望之城进行试验 实践社区，该社区来自为缺乏服务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）。这项研究计划如果成功将产生很大的影响 因为它将产生一个可扩展的，最先进的电子健康干预，以改善遗传性疾病的家庭沟通。 癌症风险将在未来的随机试验中进行评估。识别大量患者， 通过City of Hope社区的实践和表达的需求和兴趣， 这批提供者确保了研究的可行性。在癌症遗传学，交流， 干预开发和临床试验，我们的团队是理想的定位，以实现拟议的工作。在 今年夏天，Family 1st将通过提供一个以证据为基础、病人- 集中干预，以优化家庭内遗传性癌症风险的沟通。