Choosing a transplant center that will accept a particular candidate can be difficult and challenging for patients with end-stage organ failure. As transplant centers have varying levels of expertise, interests, and outcomes of solid organ transplant, patient health-related characteristics influence the variation in candidates centers wil accept. Most transplant candidates undergo waitlist work-ups as outpatients and many undergo transplant at centers not closest to their homes. Some are listed at more than one center. Several studies suggest that patients have a choice of centers. The PI, as Deputy 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, in the 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 rules. Unfortunately, in their current format, the report cards are not designed for transplant candidates, many of whom may have low health literacy and numeracy. The proposed work aims to develop and evaluate a patient-centered website and printouts of the SRTR report cards that will effectively communicate comparative information to transplant candidates about their alternatives when choosing transplant centers. We will develop a novel tool to allow candidates to tailor the report cards to their clinical profiles based on their healt-related characteristics and to communicate information on alternative transplant centers that perform transplants in patients like them. The website will also allow patients to self-refer to centers.
Aim 1 will use focus groups to determine which transplant center characteristics to present to transplant candidates and how to present these characteristics clearly in a patient- centered report card. Using this information, Aim 2 will develop a patient-centered website and printouts of the SRTR report card that effectively communicate comparative information about transplant centers to transplant candidates. Lastly, Aim 3 will conduct a randomized clinical trial to evaluate the effectiveness of the patient- centered SRTR report card. We will determine transplant candidates' comprehension and the value of the comparative quality reports, and the effect on clinical decision making and status on the waiting list. After the RCT, a convenience sample of online visitors to the new website will be assessed for similar outcomes. This proposed R01 study is beyond the scope of the SRTR contract. At the end of the project, we will change the paradigm of how patients choose a transplant center by using report cards that can be tailored to each individual's clinical profile, thereby improving a broad set of patient- centered outcomes, effectively navigating the complexity of transplant centers with varying candidate acceptance criteria, and improving satisfaction with the center selection process.
At the end of the project, we will have developed a new website and a printout format that the Scientific Registry of Transplant Recipients will use to provide information to the public. We will change the paradigm for how patients choose and refer themselves to transplant centers by using report cards that can be tailored to an individual's clinical profile. The new patient centered report card will work towards improving a broad set of patient-centered outcomes, allowing patients to effectively navigate the health system of transplant centers with varying candidate acceptance criteria, creating greater knowledge, satisfaction with the transplant center selection process, improving access to the waiting list and, in the long-run, improving posttransplant outcomes.
