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

项目摘要 在遗传咨询行业开始的50年里，系统地研究了遗传咨询（GC） 在跨专业的现实生活中的会议的过程和结果从来没有进行过。为了 优化GC质量和提高护理效率，该领域必须首先能够准确和 全面衡量GC过程，并确定哪些过程对实现积极的 患者体验和结果。本研究的首要目标是表征气相色谱过程 使用一种新颖实用的措施，并将过程和会话时间的变化与患者报告的 结果使用严格的方法来定义质量，高效GC在实践中。核心假设是， GC过程以复杂的方式影响患者的结局，并且通过评估和将过程与 我们可以确定优化GC质量和效率的方法。为了验证中心假设， 总体目标，一个可靠的，务实的清单将被用来衡量GC过程中的音频记录 会议，并描述遗传咨询师之间GC过程的变异程度和类型， 使用不同长度的实际患者会话的专业。调查将衡量患者的体验， 赋权、激活、决策和信息需求以及信息过载。符合分析 将进行，以确定GC过程的模式，这些模式始终对高分产生影响， 每个患者报告的测量值。比较GC会话的特征（包括 时间）影响所用过程的可变性和患者结局的可变性 通过随机效应多水平模型。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制咨询， 使用阶梯楔形随机化，发现过程不会导致患者结局差异 对照研究。这项研究将整合四个社区咨询委员会和一个遗传学专家的观点。 顾问咨询委员会在整个研究过程中提供重要的投入。这种参与性的方法是 选择利用不同的观点来创建可行的研究，可接受的，可用的超越 研究环境。这项研究的结果将有助于考虑哪些气相色谱过程是必不可少的 用于在最短的时间内为各种患者优化各种患者结果。这项研究预计将 改进GC过程测量，更清楚地描述遗传咨询过程中的差异 和患者报告的结果，并通过减少亲自访问时间来提高遗传咨询效率 同时保持或改善患者的治疗质量。

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.