Development of a survey to identify barriers to living donation in kidney transplant candidates

Background-Kidney transplantation from living donors, compared with deceased donors, has improved health care outcomes for patients with end-stage renal disease; however, less than 40% of transplants come from living donors. Numerous barriers may impede the identification of, and transplantation from, living donors. Objective-To develop and validate a survey to identify barriers that transplant candidates may encounter when seeking a living donor for kidney transplantation. Methods-The survey was developed in 3 phases: item identification by using persons with a stake in the process to identify key components; survey refinement, including assessment of content and face validity; and assessment of test-retest reliability by using the kappa coefficient and percent agreement for each of the scaled response items. Results-The final survey contained 10 items with a Likert scale response and 5 open-ended questions. Expert nephrologists in the field confirmed face validity and content validity of the survey. The overall kappa coefficient for the scale was 0.76, reflecting excellent agreement, with an overall percent agreement of 88.7%. Conclusion-We developed a survey to identify barriers that kidney transplant candidates may experience when seeking a living donor, which demonstrated content and face validity as well as reproducibility. This survey can by used by end-stage renal disease programs to identify barriers in candidates seeking a transplant. The results of the survey can be used to develop interventions to overcome such barriers with an ultimate goal of increasing rates of living kidney donation. (Progress in Transplantation. 2009; 19:304-311)