Understanding the impact of an EHR-integrated hereditary cancer risk assessment application on patient-provider communication

本申请是为了响应被标识为NOT-CA的特别利益通知（NOSI）而提交的- 23-041.我们目前的癌症治疗方法仍然是反应性的，许多患者的晚期表现。虽然 创新正在迅速推进，但有效的干预措施往往无法长期付诸实践。中的程序 丹娜-法伯/哈佛癌症中心的癌症风险、预防和早期检测（CaRPED） (DF/HCC）的出现是因为人们越来越认识到将技术与DF/HCC专业知识相结合的重要性， 癌症科学在早期阶段发现癌症，当干预措施最有效时。癌症护理 交付研究（CCDR）计划旨在调查改善护理交付的策略，以确保 理论上可以在临床试验基础上起作用的干预措施， 这是一个非常重要的问题，我们必须确保弱势群体不会被抛在后面。主要研究者是 CaRPED计划，并领导了PREMM模型的开发（由RO 1CA 132829资助，2008- present）。PREMM 5算法评估最常见的遗传性癌症综合征之一，Lynch LS综合征（LS），影响279人中的1人，并导致终身癌症风险高。PREMM 5现在是 指南推荐的评估LS风险的标准。我们最近开发了一种适应扫盲的， 基于PREMM 5的面向患者的遗传性癌症风险评估应用程序。当嵌入到电子 健康记录（EHR），PREMM 5能够识别大量的高危患者，然而，四分之三的 的符合条件的高危患者未接受遗传学转诊或检测。优化风险收益 评估时，了解PREMM 5应用程序作为临床决策支持工具的作用至关重要， 临床实践中的医患沟通支持工具。这一拟议的补充项目代表 DF/HCC CaRPED和CCDR计划与调查和数据管理之间的合作 核心，并将通过对患者的评估，研究PREMM 5在患者-提供者沟通中的作用 以确定需要改进的关键领域。我们将使用混合方法-在目标1中 我们将定量评估人口因素与患者之间是否存在关联， 结局，包括临床访视期间PREMM 5的讨论、转诊接收、转诊吸收，以及 基因检测在选择进行遗传学转诊的个体与那些没有进行遗传学转诊的个体中的应用。在 目标2，我们将根据PREMM 5评分和他们的临床表现，对高危患者进行深入的半结构化访谈。 供应商阐明使用PREMM 5作为沟通支持工具的主要障碍和促进因素， 方便下游护理。其结果将是一个更公平和临床上有用的版本PREMM 5 可以在DF/HCC范围内实施，以改善患者与提供者之间关于LS风险的沟通。 此外，我们计划使用本研究中获得的见解来指导面向患者的多基因面板的开发。 风险评估工具（PREMMplus）评估19种遗传性癌症基因的风险。

This application is being submitted in response to the Notice of Special Interest (NOSI) identified as NOT-CA- 23-041. Our current approach to cancer care remains reactive, with late presentation of many patients. Though innovation is rapidly advancing, effective interventions are often not perpetuated into practice. The Program in Cancer Risk, Prevention, and Early Detection (CaRPED) of the Dana-Farber/Harvard Cancer Center (DF/HCC) arose out of growing recognition of the importance of bridging technology with DF/HCC expertise in cancer science to detect cancer at earlier stages, when interventions are most effective. The Cancer Care Delivery Research (CCDR) program was designed to investigate strategies to improve care delivery to ensure that interventions that theoretically can work based on clinical trials, do work in the context of oncology practice, and that vulnerable populations are not left behind. The Principal Investigator is co-leader of the CaRPED program and has led the development of the PREMM models (funded by RO1CA132829, 2008- present). The PREMM5 algorithm assesses for one of the most common hereditary cancer syndromes, Lynch syndrome (LS), which affects 1 in 279 people and causes high lifetime cancer risk. PREMM5 is now the guideline-recommended standard for assessing LS risk. We have recently developed a literacy-adapted, patient-facing hereditary cancer risk assessment app based on PREMM5. When embedded in the electronic health record (EHR), PREMM5 was able to identify a large number of at-risk patients, however, three quarters of at-risk patients eligible did not receive genetics referral or testing. To optimize the benefit of risk assessment, it is critical to understand the role of the PREMM5 app as a clinical decision support tool and patient-provider communication support tool in clinical practice. This proposed supplemental project represents a collaboration between the DF/HCC CaRPED and CCDR programs and the Survey and Data Management Core and will investigate the role of PREMM5 in patient-provider communication through evaluation of patient outcomes in order to identify key areas for improvement. We will used a mixed-methods approach – in Aim 1 we will quantitatively assess whether there are associations between demographic factors and patient outcomes, including discussion of PREMM5 during the clinical visit, referral receipt, referral uptake, and genetic testing uptake in individuals who chose to proceed with genetics referral versus those who didn’t. In Aim 2, we will use in-depth semi-structured interviews with at-risk patients per their PREMM5 scores and their providers to elucidate key barriers and facilitators to use of PREMM5 as a communication support tool to facilitate downstream care. The result will be a more equitable and clinically useful version of PREMM5 that can be implemented DF/HCC-wide to improve patient-provider communication about risk for LS. Further, we plan to use insights gained in this study to guide development of a multi-gene panel patient-facing risk assessment tool (PREMMplus) to assess risk for 19 hereditary cancer genes.