Creating a patient-centered report card for solid organ transplant candidates

NIH RePORTER · AHRQ · R01 · $250,000 · view on reporter.nih.gov ↗

Abstract

 DESCRIPTION (provided by applicant): 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 pat...

Key facts

NIH application ID
9844954
Project number
5R01HS024527-05
Recipient
HENNEPIN HEALTHCARE RESEARCH INSTITUTE
Principal Investigator
AJAY K ISRANI
Activity code
R01
Funding institute
AHRQ
Fiscal year
2020
Award amount
$250,000
Award type
5
Project period
2016-04-01 → 2022-10-31