Increasing Access to Genetic Testing in Underserved Patients Using a Multilingual Conversational Agent

使用多语言会话代理增加服务不足的患者获得基因检测的机会

• 批准号: 10624338
• 负责人: TIMOTHY W. BICKMORE
• 金额: $ 78.25万
• 依托单位: UNIVERSITY OF SOUTHERN CALIFORNIA
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-06-01 至 2026-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10624338
• 关键词: Academic Medical Centers; Address; Advanced Malignant Neoplasm; Age; Area; Behavior; California; Cancer Patient; Caring; Clinic; Clinical; Clinical Practice Guideline; Communication; Computers; Counseling; County; Disease; Disparity; Early Diagnosis; Education; Ensure; Epithelial ovarian cancer; Face; Family; Family history of; Family member; Focus Groups; Foundations; Future; Genetic; Genetic Counseling; Genetic Services; Genomics; Goals; Guidelines; Health Personnel; Health education; Healthcare; Hospitals; Individual; Information Technology; Inherited; Internet; Interview; Knowledge; Language; Limited English Proficiency; Linguistics; Los Angeles; Low Literacy Population; Malignant Neoplasms; Malignant neoplasm of male breast; Malignant neoplasm of pancreas; Malignant neoplasm of prostate; Measures; Medical center; Modeling; Multilingualism; Oncology; Operative Surgical Procedures; Ovarian; Pancreas; Participant; Patient Care; Patients; Population; Predisposition; Prevention; Prostate; Provider; Randomized, Controlled Trials; Readiness; Recommendation; Recording of previous events; Relative Risks; Research; Resources; Rural Community; Rural Population; Site; Technology; Test Result; Testing; Universities; University Hospitals; Update; Work; access disparities; advanced disease; animation; arm; cancer care; cancer diagnosis; cancer genetics; cancer initiation; cancer risk; cancer type; care outcomes; clinical center; cohort; contextual factors; genetic testing; implementation barriers; implementation context; improved; innovation; literacy; neoplasm resource; non-verbal; novel; patient population; patient subsets; pilot test; primary outcome; randomized trial; recruit; rural setting; safety net; satisfaction; secondary outcome; shared decision making; targeted treatment; testing access; tool; treatment as usual; trial comparing; uptake; usability; verbal

ABSTRACT Background. The volume of patients who meet national criteria for germline genetic testing based on a cancer diagnosis alone, regardless of family history (i.e. ovarian, pancreatic, advanced prostate, etc.) is rapidly growing. Germline genetic test results can inform oncology and surgical treatment decisions, as well as early detection and prevention for the family. However, traditional pre- and post-test genetic counseling approaches may not be sufficient to meet the growing need. Additionally, traditional pre-test counseling may be a barrier, leading to decreased uptake, especially in those with advanced disease. Patients cared for in settings with limited or no genetic services, including low-literacy, non-English speaking, and rural community patients already face disparities in access. As such, these patients remain underrepresented in clinical and research cohorts, and innovative strategies to optimize genetic counseling approaches are understudied. Relational Agents (RAs) are an effective means of automating health education and counseling, as well as overcoming literacy barriers in the use of information technologies. RAs, animated computer characters simulate face-to-face conversation between a patient and a provider using verbal and nonverbal conversational behavior. Overall Goals. This study will develop an English and Spanish RA to communicate personalized pre-test genetic education to a cohort of cancer patients who meet established cancer-based genetic testing criteria across two diverse clinical settings (including a low-resource, urban, safety-net hospital and a university medical center that serves a significant rural population). We hypothesize that the use of an RA will increase the proportion of patients who receive genetic test results within 90 days of initiating cancer care, compared to usual care. Aim 1 is to develop an English- and Spanish-language RA using a patient-driven approach. Aim 2 is to conduct a multisite randomized controlled trial of the RA to deliver pre-test education versus usual care in English- and Spanish-speaking patients to compare the proportion in each arm who receive genetic test results in 90 days at Los Angeles County+University of Southern California Medical Center and University of Rochester Medical Center. Aim 3 is to understand the implementation context and identify facilitators and barriers to utilizing the RA in these clinical settings. Impact. Our deliverable will be multilingual patient-facing RA to deliver pre-test genetic education. This RA will be developed and evaluated in two distinct patient populations and clinic workflows, can be rapidly updated as practice evolves, and will ultimately be available on the internet for clinics and patients to utilize. If successful, this would be a novel, effective, and scalable means of providing genetics education that could improve patient decisional preparedness, knowledge, and satisfaction, ultimately leading to increased access for patient populations who are traditionally underserved in genetics. Understanding the implementation context and identifying facilitators and barriers to integrating a RA will increase sustainability and generalizability.

摘要 背景符合基于癌症的生殖系基因检测国家标准的患者数量 单独诊断，不考虑家族史（即卵巢、胰腺、晚期前列腺等）正在迅速增长。 生殖系基因检测结果可以为肿瘤学和手术治疗决策以及早期发现提供信息 和家庭预防。然而，传统的测试前和测试后遗传咨询方法可能不适用于 足以满足日益增长的需求。此外，传统的考前咨询可能是一个障碍，导致 减少摄取，特别是在那些晚期疾病。在有限或无 遗传服务，包括低识字率，非英语国家，和农村社区的病人已经面临 在获取方面的差距。因此，这些患者在临床和研究队列中的代表性仍然不足， 优化遗传咨询方法的创新策略正在研究之中。关系代理（RA） 是自动化健康教育和咨询的有效手段， 使用信息技术的障碍。RA，动画计算机角色模拟面对面 患者和提供者之间使用语言和非语言对话行为的对话。整体 目标.这项研究将开发一个英语和西班牙语的RA，以交流个性化的预测试遗传学。 对一组符合两个国家的既定癌症基因检测标准的癌症患者进行教育， 多样化的临床环境（包括资源不足的城市安全网医院和大学医疗中心， 为广大农村人口服务）。我们假设使用RA会增加 与常规治疗相比，在开始癌症治疗后90天内获得基因检测结果的患者。目的 1是使用患者驱动的方法开发英语和西班牙语RA。目标二是开展一项 RA的多中心随机对照试验，以英语提供测试前教育与常规护理， 西班牙语患者，比较每组中在90天内获得基因检测结果的比例， 洛杉矶县+南加州大学医学中心和罗切斯特大学医学院 中心目标3是了解实施背景，并确定利用 RA在这些临床环境中。冲击我们的交付成果将是面向多语言患者的RA，以交付预测试 基因教育该RA将在两个不同的患者人群和诊所中开发和评价 工作流程，可以随着实践的发展而快速更新，最终将在互联网上提供给诊所 患者使用。如果成功，这将是一种新颖，有效和可扩展的遗传学方法， 教育，可以提高病人的决策准备，知识和满意度，最终导致 增加了传统上在遗传学方面服务不足的患者群体的机会。了解 实施背景和确定整合RA的促进者和障碍将提高可持续性， 普遍性