Tool to Aid Patients in Selecting a Liver Transplant Center

Abstract

Variations in candidate and donor acceptance criteria may influence access and mortality for liver transplantation. We sought to understand how recipient and donor characteristics vary across centers and how patients interpret this information, and we used these data to develop a tool to provide tailored information to candidates seeking a center (www.transplantcentersearch.org). We analyzed liver recipient data from the Scientific Registry of Transplant Recipients to determine how recipient and donor characteristics (eg, age, Medicaid use, and human immunodeficiency virus status) varied across programs. Data included recipients and donors at each US program between January 1, 2015, and December 31, 2017. The variation in characteristics was plotted with centers stratified by total transplant volume and by volume of each characteristic. A subset of characteristics was plotted to show variation over 3 years. We created mockups of potential reports displaying recipient characteristics alongside pretransplant and posttransplant outcomes and solicited feedback at patient and family interviews and focus groups, which included 39 individuals: 10 pilot interviews with candidates seeking liver transplant at the University of Minnesota-Fairview (UMNF) and 5 focus groups with 13 UMNF candidates, 6 UMNF family members, and 10 national recipients. Transcripts were analyzed using a thematic analysis. Several themes emerged: (1) Candidates experience gaps in existing education about center options; (2) patients requested information about how selection criteria might impact access to transplant; and (3) information tailored to a candidate's medical characteristics can inform decisions. Characteristics shown on mockups varied across centers (P < 0.01). Variation was widespread for small and large centers. In conclusion, variation exists in recipient and donor characteristics across centers. Liver transplant patients provide positive feedback upon viewing patient-specific search tools.

FIG. 1.

Patient-specific data entry screen mockup discussed in focus groups. The original color figure has been converted to grayscale.

FIG. 2.

Early iteration of patient-specific search results mockup. The original color figure has been converted to grayscale.

FIG. 3.

Revised iteration of patient-specific search results mockup. The original color figure has been converted to grayscale.

FIG. 4.

The distribution of transplant recipient and donor volumes for small (1-25 transplants/year), medium (26-75 transplants/year), and large (76+ transplants/year) centers for each recipient and donor characteristic (P < 0.01 for all characteristics). The darker shading reflects a higher number of recipients/donors at a center for each characteristic. A larger shaded area reflects a greater proportion of US centers for each center size. HCV+ donor and recipient indicates that the recipient has HCV+ serology status and the donor has HCV+ serology status. HIV+ recipient indicates that the recipient has HIV+ serology status.

FIG. 5.

The proportion of recipients of age ≥65 years for each US center for 3 consecutive 1-year periods (2015-2017). Points represent the mean proportions for each transplant center, and the lines represent the minimum-maximum range for each transplant center.