Patients' decisions for treatment of end-stage renal disease and their implications for access to transplantation

Gaining access to kidney transplantation is a complex process that involves treatment decisions made by patients. Despite several advantages of kidney transplantation, some patients choose to remain on hemodialysis for treatment of end-stage renal disease. The present study was undertaken to describe the sociocultural factors influencing patients' decisions to remain on dialysis compared to those who sought a transplant. The study also examined whether African Americans made decisions different from European Americans which would offer insights into one of many factors resulting in them receiving disproportionately fewer kidney transplants. Using a qualitative approach supplemented by a quantitative approach, interviews employing open-ended questions and a card sort technique were conducted with 79 hemodialysis patients. Patients who preferred to remain on dialysis were significantly older and more likely to be unmarried and Protestant. The relationship between treatment decisions and ethnicity was inconclusive due to multiple, interrelated covariates. The three most common reasons patients reported for remaining on dialysis included: doing well on dialysis, fear of being cut on from a transplant, and knowing other patients whose kidney transplant failed. This study identified sociocultural and ethnomedical beliefs and values about the body and transplantation that inform patients' treatment decisions. This study also generated data that illuminate the complexity of patients' decisions and how these affect patients' preferences regarding transplantation. The results emphasize the need for policy makers to recognize patients' decisions when accounting for alleged difficulties in gaining access to transplantation. (C) 2001 Elsevier Science Ltd. All rights reserved.