New Patient-centered Metric for Transplant Center Report Cards

项目摘要/摘要 对于患者来说，选择一家结果最好的移植中心可能是一项挑战。几项研究表明 患者可以选择中心，但他们往往不知道自己的选择可能会有什么不同。少年派， 作为移植受者科学登记处(SRTR)的医学主任，提供比较 向公众公布美国每个实体器官移植中心的信息。调整后的风险 中心成绩单中显示的结果说明了移植受者的健康相关特征， 供者特征及移植相关因素。许多移植中心都提供这份SRTR的打印件 提交给候选人的成绩单，以符合医疗保险和医疗补助服务中心的规定。不幸的是， 按照目前的格式，中心报告卡提供了三个风险调整后的指标：等待名单上的存活率， 移植成功率和移植后1年存活率。我们的随机试验表明，患者通常不会 在列出后，将最重要的死亡率预测指标区分优先顺序。因此，SRTR成绩单 需要进行改进，以便从等待上市时起就专注于整个护理连续性。 该提案旨在加强和评估一个以患者为中心的网站和打印的SRTR成绩单 这将有效地向移植候选人传达关于存活率的比较信息，因为 在不同的中心挂牌。该项目将使用Hibbard博士发表的概念模型，并开发一种新的 英语和西班牙语的成绩单。目标1将使用焦点小组来确定存活率的衡量标准 由于名单将在以患者为中心的成绩单上清楚地呈现给移植候选人。使用这个 信息，Aim 2将以英语和西班牙语进行可用性会议，以开发一个以患者为中心的网站 和SRTR成绩单打印输出。新的成绩单将允许患者最好地利用分析和 使用新的衡量标准进行决策的经验思维方式。英文和西班牙文网站 将包括一个视频导航器和一个虚拟聊天代理，以帮助患者浏览基于网络的成绩单。 最后，Aim 3将分别用英语和西班牙语进行随机临床试验(RCT)，以评估 新的以患者为中心的SRTR成绩单的有效性。这些RCT将招收潜在的移植 在移植中心挂牌前的候选人。这项研究超出了SRTR合同的范围。 在项目结束时，我们将使用英语和西班牙语帮助患者选择移植中心 自上市以来提供存活率信息的新成绩单的版本。新成绩单 可以改善一系列以患者为中心的结果，例如有效地驾驭 移植中心，提高对中心选择过程的满意度，并有可能减少 等待名单，从而从长远来看产生更好的结果。

Project Summary/Abstract Choosing a transplant center with the best outcomes can be challenging for patients. Several studies suggest that patients have a choice of centers, but that they are often unaware of how their options may differ. The PI, as Medical Director of the Scientific Registry of Transplant Recipients (SRTR), provides comparative information to the public about each solid organ transplant center in the United States. The risk adjusted outcomes, shown in center report cards, account for the transplant recipient’s health-related characteristics, donor characteristics and transplant related factors. Many transplant centers provide a print-out of this SRTR report card to their candidates to comply with Centers for Medicare & Medicaid Services rules. Unfortunately, in their current format, the center report cards provide three risk-adjusted metrics: survival on the waiting list, transplant rate, and 1-year post-transplant survival. Our randomized trial has shown that patients often do not prioritize the metric that is the most important predictor of mortality after listing. Thus, the SRTR report cards need to be revamped to instead focus on the entire continuum of care from the time of wait listing. The proposal aims to enhance and evaluate a patient-centered website and printouts of the SRTR report cards that will effectively communicate comparative information to transplant candidates about survival rate since listing at different centers. The project will use Dr. Hibbard’s published, conceptual model and develop a new report card in English and Spanish. Aim 1 will use focus groups to determine how the metric of survival rate since listing will be presented to transplant candidates clearly in a patient-centered report card. Using this information, Aim 2 will conduct usability sessions in English and Spanish to develop a patient-centered website and printouts of the SRTR report card. The new report cards will allow patients to best use both analytic and experiential modes of thinking to use the new metric for decision-making. Both the English and Spanish website will include a video navigator and a virtual chat agent to help patients navigate the web-based report cards. Lastly, Aim 3 will conduct randomized clinical trials (RCTs) in English and Spanish, separately, to evaluate the effectiveness of the new patient-centered SRTR report card. These RCTs will enroll potential transplant candidates prior to listing at a transplant center. This study is beyond the scope of the SRTR contract. At the end of the project, we will help patients choose a transplant center by using the English and Spanish versions of the new report cards that provide information about survival rate since listing. The new report cards can improve a broad set of patient-centered outcomes such as effectively navigating the complexity of transplant centers, improving satisfaction with the center selection process, and potentially reducing death on the waiting list, — thereby, producing better outcomes in the long run.