Barriers facing patients referred for kidney transplant cause loss to follow-up

End stage renal disease impacts many Americans, however, transplant is the best treatment option increasing life years and offering a higher quality of life than possible with dialysis. Ironically, many who are eligible for transplant do not follow through on the complex work-up protocols required to be placed on the transplant waiting list. Here we surveyed vascular access clinic patients at an academic medical center referred for transplant that did not follow up on the needed work-up to be added to the national transplant waiting list. The most frequent responses of 83 patients for not pursuing transplantation were that the patients did not think they would pass the medical tests, they were scared of getting a transplant, and they could not afford the medicine or the transplantation. These impediments may result from unclear provider communication, misinformation received from peers or other sources, misperceptions related to transplant surgery, or limited health literacy/health decision making capacity. Thus, patients with end stage renal disease lost to follow up after referral for kidney transplant faced both real and perceived barriers pursuing transplantation.