Genetic Counseling Processes Result in Outcomes (GC-PRO) Study

项目摘要 在遗传咨询职业开始的50年里，对遗传咨询(GC)的系统研究 在跨专业的真实会议中的过程和结果从未进行过。为了 优化GC质量和提高护理效率，首先必须能够准确和现场 全面衡量GC流程，确定哪些流程最关键才能取得积极成果 患者的经历和结果。这项研究的首要目标是描述GC过程 使用一种新的实用措施，并将流程和会话时间的变化与患者报告的情况联系起来 在实践中使用严格的方法定义高质量、高效率的GC。中心假设是 GC流程以复杂的方式影响患者的预后，并通过评估和将流程与 结果我们可以找到优化GC质量和效率的方法。检验中心假说并获得 总体目标是，将使用可靠、实用的清单来衡量录音中的GC过程 并表征遗传咨询师和遗传咨询师之间GC过程的变异性程度和类型 使用不同长度的实际患者会议的专科。调查将衡量患者的体验， 授权、激活、决策和信息需求以及信息过载。重合分析 将进行，以确定持续影响高分的GC过程的模式 患者报告的每一项测量。比较GC会话的特点(包括 时间)影响所用过程的可变性和患者结果的可变性 通过随机效应的多水平模型。然后我们将测试GC效率干预的有效性 根据患者的信息偏好和价值评估量身定做咨询，并删除选择 使用阶梯楔形随机抽样的过程发现对患者结果的差异没有贡献 对照研究。这项研究将综合四个社区咨询委员会的观点和一个基因 顾问顾问委员会在整个研究过程中提供至关重要的意见。这种参与式的方法是 选择利用不同的视角来创建可行、可接受和可用的研究 研究环境。这项研究的结果将有助于考虑哪些GC过程是必要的 用于在最短的时间内为不同的患者优化各种患者的结果。这项研究预计将 改进GC过程的测量，更清楚地描述遗传咨询过程中的差异 和患者报告的结果，并通过减少亲自就诊次数来提高遗传咨询效率 同时维持或改善高质量的患者结果。

Project Summary In the 50 years since the genetic counseling profession began, a systematic study of genetic counseling (GC) processes and outcomes in real-life sessions across specialties has never been conducted. In order to optimize GC quality and improve efficiency of care, the field must first be able to accurately and comprehensively measure GC processes and determine which processes are most critical to achieve positive patient experiences and outcomes. The overarching objective of this study is to characterize GC processes using a novel and pragmatic measure and to link variations in processes and session time to patient-reported outcomes using a rigorous approach to define quality, efficient GC in practice. The central hypothesis is that GC processes impact patient outcomes in complex ways and that by evaluating and linking processes with outcomes we can identify ways to optimize GC quality and efficiency. To test the central hypothesis and attain the overall objective, a reliable, pragmatic checklist will be used to measure GC processes in audio recorded sessions and to characterize the extent and types of variability in GC processes across genetic counselors and specialties using actual patient sessions of varying lengths. Surveys will measure patient experience, empowerment, activation, decisional and informational needs and information overload. Coincidence analysis will be conducted to identify patterns of GC processes that consistently make a difference for high scores on each patient-reported measure. Comparison of the extent to which characteristics of GC sessions (including time) influence variability in the processes used and variability in patient outcomes will be accomplished through random effects multilevel models. We will then test the effectiveness of a GC efficiency intervention that tailors counseling to a patients’ informational preferences and values assessments and removes select processes found not to contribute to differences in patient outcomes using a stepped-wedge randomized controlled study. The study will integrate perspectives from four community advisory boards and a genetic counselor advisory board to provide vital input throughout the study process. This participatory approach was chosen to leverage diverse perspectives to create research that is feasible, acceptable, and usable beyond the research environment. The results of this study will be useful in considering which GC processes are essential for optimizing various patient outcomes in minimal time for a diversity of patients. This study is expected to improve measurement of GC processes, more clearly delineate differences in genetic counseling processes and patient reported outcomes, and increase genetic counseling efficiency by reducing in person visit times while maintaining or improving quality patient outcomes.