Patients prioritize waitlist over posttransplant outcomes when evaluating kidney transplant centers

Abstract

Factors that patients value when choosing a transplant center have not been well studied. In order to guide the improvement of patient-facing materials, we conducted an anonymous electronic survey of patients that assessed the relative importance of patient experience, practical considerations, transplant center reputation, center experience, and waitlist when selecting a transplant center. A total of 409 respondents completed the survey, of whom 68% were kidney transplant recipients and 32% had chronic kidney disease or were on dialysis. Participants had mean age 56 ± 12 years and were predominantly female (61%), white (79%), and had an associate's degree or higher (68%). Participants most often prioritized waitlist when evaluating transplant centers (transplanted 26%, chronic kidney disease 40%), and waitlist was almost twice as likely as outcomes to be ranked most important (30% vs 17%). Education level and transplant status were significantly associated with factors used for center prioritization. Waitlisted respondents most commonly (48%) relied on physicians for information when selecting a center, while a minority cited transplant-specific organizations. In order to improve shared decision-making, materials outlining center-specific waitlist features should be prioritized. Novel patient-oriented metrics for measuring transplant center quality that align with patient priorities must be explored.

Keywords: Scientific Registry for Transplant Recipients (SRTR); clinical research/practice; health services and outcomes research; kidney transplantation/nephrology; organ procurement organization; patient characteristics; quality of care/care delivery; social sciences.

FIGURE 1

Highest ranked transplant factor stratified by transplant group. Both transplanted and CKD participants most often ranked waitlist factors as most important when evaluating transplant centers. Center experience was the second most often prioritized factor for CKD patients, whereas transplant outcomes was the second most often prioritized factor for transplanted patients. CKD, chronic kidney disease [Color figure can be viewed at wileyonlinelibrary.com]

FIGURE 2

Density plot of waitlist (A) and practical considerations (B) composite scores stratified by transplant status. For waitlist (A), the mean composite score for CKD respondents was 78.5, while the mean composite score for transplanted patients was 77.6. For practical considerations (B), the mean composite score for CKD respondents was 78.1, while the mean composite score for transplanted patients was 72.3. CKD, chronic kidney disease [Color figure can be viewed at wileyonlinelibrary.com]

FIGURE 3

Resource utilization when choosing a transplant center, of respondents who are currently waitlisted (n = 62). Physician/nephrologist was the most commonly listed resource (48% of participants), whereas the SRTR was least commonly listed (<10%). NKF, National Kidney Foundation; SRTR, Scientific Registry of Transplant Recipients; UNOS, United Network of Organ Sharing [Color figure can be viewed at wileyonlinelibrary.com]