UTILIZATION AND EVALUATION OF LIVING-RELATED DONORS FOR PATIENTS WITH ADULT POLYCYSTIC KIDNEY-DISEASE

Adult onset polycystic kidney disease (ADPKD) causes 10% of all end-stage renal disease in the United States. Use of living-related donors for renal transplants provides significant advantages over cadaver donors. Presymptomatic testing to determine ADPKD status of potential donors by DNA linkage analysis is potentially more accurate than renal ultrasonography for related donors < 30 years old. To determine the utilization of living donor transplants and linkage studies, a survey was mailed to 202 transplant centers in the United Network of Organ Sharing. The 111 respondents reported 5,026 renal transplants done in 1988 of which 390 (7.8%) involved an ADPKD recipient. Only 7% of these 390 transplants utilized a living-related donor compared to the 20% rate reported for all renal transplants. DNA linkage studies were not used by any of the centers performing related donor transplants in 1988 and only 29% reported provision of risk counseling. We conclude that living-related transplants are under-utilized for ADPKD recipients due to conservative transplant policies, concern about the inaccuracy of presymptomatic diagnosis, or decreased availability of asymptomatic donors in these families. DNA linkage analysis is also underutilized due to lack of knowledge of its availability and accuracy, concerns about its cost and misconceptions about the accuracy of ultrasonography. Since the accuracy of molecular genetics techniques for presymptomatic diagnosis of ADPKD continues to improve and because transplants from living-related donors convey significant advantages to recipients over cadaver transplants, we recommend that (1) a living-related transplant be considered when feasible for ADPKD patients, (2) genetic counseling and DNA linkage analysis for presymptomatic testing be utilized for related donors when applicable, and (3) communication be improved between renal transplant and genetic centers.