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

本申请是为了回应被确认为非CA-CA的特殊利益通知(NOSI)而提交的 23-041.我们目前的癌症护理方法仍然是反应性的，许多患者出现的时间较晚。尽管 创新正在迅速推进，有效的干预措施往往不会长期付诸实践。中的计划 达纳-法伯/哈佛癌症中心的癌症风险、预防和早期检测(CARPED) (df/hcc)是由于人们日益认识到将df/hcc技术与df/hcc的专业知识联系起来的重要性。 癌症科学在干预措施最有效的早期阶段发现癌症。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，在肿瘤学的背景下确实起作用 实践，并确保弱势群体不会被抛在后面。首席调查员是 CARPED计划，并领导PREMM模型的开发(由RO1CA132829资助，2008- 出席)。PREMM5算法评估最常见的遗传性癌症综合征之一Lynch 综合症(LS)，每279人中就有1人受到影响，并导致高终生癌症风险。PREMM5现在是 指南-评估LS风险的推荐标准。我们最近开发了一种适应识字能力的 基于PREMM5的面向患者的遗传性癌症风险评估APP。当嵌入到电子设备中时 健康记录(EHR)，PREMM5能够识别大量高危患者，然而，四分之三 符合条件的高危患者中，没有接受遗传学转介或检测。优化风险效益 评估，理解PREMM5应用程序作为临床决策支持工具和 临床实践中的患者-提供者沟通支持工具。这个拟议的补充项目代表 DF/HC CARPED和CCDR项目与调查和数据管理之间的协作 核心，并将通过对患者的评估来调查PREMM5在患者与提供者沟通中的作用 结果，以确定需要改进的关键领域。在目标1中，我们将使用混合方法 我们将定量评估人口统计因素与患者之间是否存在关联 结果，包括在临床访问期间对PREMM5的讨论，转诊收据，转诊吸收，以及 选择继续进行遗传学转介的个体与不选择进行遗传测试的个体之间的基因测试吸收。 目标2，我们将对高危患者进行深入的半结构化访谈，根据他们的PREMM5评分和他们的 提供商阐明使用PREMM5作为通信支持工具的主要障碍和促进者，以 促进下游护理。结果将是一个更公平和临床有用的PREMM5版本 这可以在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，我们计划利用在这项研究中获得的见解来指导面向患者的多基因小组的开发。 风险评估工具(PREMMplus)评估19个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.