Lack of Listing Status Awareness: Results of a Single-Center Survey of Hemodialysis Patients

Abstract

This study surveyed hemodialysis patients in an urban transplant center serving a predominantly African American population to identify existing and potential barriers to transplantation. The survey used the Dialysis Patient Transplant Questionnaire (DPTQ) to collect self-reported data including interest in a deceased donor kidney transplant and self-reported listing status. We compared patients' survey data to their UNOS listing and computerized medical record at time of interview. Among the 116 patients surveyed, 83 (71.6%) reported interest in a deceased donor kidney transplant. Eighteen (52.9%) of the 34 patients undergoing pretransplantation workup were unaware of their true listing status, and 88.9% of these patients mistakenly believed they were wait listed. All of the patients who mistakenly thought they were listed were undergoing workup. Finding that a significant number of hemodialysis patients who want a deceased donor kidney transplant mistakenly think they are listed when they are not is a documentable deficiency in communication and a potential barrier to transplantation. The finding highlights a correctable problem in communication and work flow that could help to improve transplant center effectiveness. It also reveals that self-reported waiting list status significantly overestimated true waiting list status for our patients at time of interview.