The Scientific Registry of Transplant Recipients (SRTR) provides federally mandated program-specific transplant data to the public. Historically, SRTR data has been disseminated to government and institutional stakeholders. Currently, there is little understanding of how different program outcomes are prioritized by patients in selecting a program for transplantation. This study recruited 479 transplant advocacy group members from mailing lists and social media of 3 organizations: National Kidney Foundation (NKF), Transplant Families (TF), and Transplant Recipient International Organization (TRIO). Survey participants identified how many different programs would be reasonable to consider and then viewed 4 measures that are currently displayed on SRTR public search results websites and 6 measures not currently displayed. For each measure, participants entered the importance on a 5 point Likert scale. 402 completed the survey (TF=26; TRIO=34; NKF=342). Average age was 55 (min 29, max 88); 26% completed less than a college degree. 78% indicated that considering more than 1 program would be reasonable. A majority of participants at the 3 organizations indicated each currently displayed measure (not including distance away from program) as very or extremely important. Therefore, this survey indicates that patients find a choice between two or more programs to be reasonable and value multiple measures in assessing programs where they may want to undergo transplantation.

CITATION INFORMATION: Schaffhausen C., Bruin M., Chu S., Snyder J., Kasiske B., Israni A. The Importance of Transplant Program Measures: Surveys of 3 National Patient Advocacy Groups Am J Transplant. 2017;17 (suppl 3).

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