New Patient-centered Metric for Transplant Center Report Cards

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.