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 selfreported waiting list status significantly overestimated true waiting list status for our patients at time of interview.

Sex Differences and Attitudes toward Living Donor Kidney Transplantation among Urban Black Patients on Hemodialysis

“…The results are on the basis of a convenience sample of 101 urban-dwelling black patients with ESRD at two hemodialysis clinics affiliated with a university hospital in north Philadelphia that serve a largely minority lowincome patient population (53). Despite their comparatively high rate of transplant referral, our patients are similar to other patients in that many do not complete the workup step toward the waitlist (13,16,48). Although other studies show that patients with private insurance have better access to LDKT (24,25), only two of our patients had private insurance, and neither wanted an LDKT.…”

“…The survey data were collected with the Temple University Hospital DPTQ, an instrument designed with questions validated in previous studies and questions developed by Gillespie et al (16). The DPTQ takes approximately 30 minutes to administer and is written at a 6th grade literacy level.…”

“…To better understand sex differences in the context of potential barriers to LDKT, we administered the Dialysis Patient Transplant Questionnaire (DPTQ) (16) in two urban, predominantly black hemodialysis units. The DPTQ was specifically designed to identify barriers to transplantation and living donor recruitment.…”

Kidney transplant referral practices in southeastern dialysis units

“…Previous research suggests that a majority of dialysis patients [71.6% (11)- 94% (12)] are interested in getting a KTx. In our study, only 19% of the dialysis professionals completing this survey thought that >50% of their patients were interested in KTx.…”

Waiting List Management for Pancreas and Islet Transplantation

“…As important as communication is between referring/primary care physicians and the transplant center, it is equally important for the transplant center to communicate the patient's status to the patient. A recent survey study of dialysis patients revealed that more than half of patients who were undergoing pretransplantation work-up were unaware of their true listing status [3]. Nearly 89% of these patients who completed the Dialysis Patient Transplant Questionnaire and were unaware of their true listing status mistakenly believed they were listed and 11% were unsure of their current status.…”