New Patient-centered Metric for Transplant Center Report Cards

项目总结/摘要 选择具有最佳结果的移植中心对患者来说可能具有挑战性。几项研究表明 患者可以选择中心，但他们往往不知道他们的选择可能会有什么不同。私家侦探， 作为移植接受者科学登记处（SRTR）的医学主任， 向公众提供有关美国每个实体器官移植中心的信息。风险调整 结果，显示在中心报告卡中，说明了移植受体的健康相关特征， 供体特征和移植相关因素。许多移植中心提供了一份打印的SRTR 报告卡，以符合医疗保险和医疗补助服务中心的规则。不幸的是， 在目前的格式中，中心的报告卡提供了三个风险调整指标：在等待名单上的生存， 移植率和移植后1年生存率。我们的随机试验表明，患者通常不会 优先考虑作为上市后死亡率最重要预测因素的指标。因此，SRTR报告卡 需要进行修改，转而关注从等候名单开始的整个连续护理。 该提案旨在加强和评估以患者为中心的网站和SRTR报告卡的印刷 这将有效地向移植候选人传达有关存活率的比较信息， 在不同的中心上市。该项目将使用Hibbard博士发表的概念模型， 英文和西班牙文成绩单。Aim 1将使用焦点小组来确定生存率的指标 因为名单将在以患者为中心的报告卡中清楚地呈现给移植候选人。使用此 信息，目标2将进行英语和西班牙语的可用性会议，以开发以患者为中心的网站 并打印SRTR报告卡。新的报告卡将允许患者最好地使用分析和 经验思维模式，以使用新的度量决策。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报告卡。 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报告卡的有效性。这些RCT将招募潜在的移植 候选人在移植中心上市之前。这项研究超出了SRTR合同的范围。 在项目结束时，我们将帮助患者选择移植中心，通过使用英语和西班牙语 新的报告卡版本，提供关于列名以来存活率的信息。新的成绩单 可以改善广泛的以患者为中心的结果，例如有效地导航的复杂性， 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.