More than 90,000 living, healthy adults have donated a kidney in the United States over the last 20 years. Despite efforts over the past few decades to improve our understanding of the short- and long-term outcomes of living kidney donation, it is clear that we have more knowledge in some areas (e.g., surgical and medical complications) than in others (e.g., psychological outcomes, financial impact). While the transplant community and changes in federal regulations have brought attention to the need for more systematic study of living donor outcomes, there remains a paucity of scientifically rigorous multisite, prospective outcome studies.
The Kidney Donor Outcomes Cohort (KDOC) study, funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), was established to characterize the short- and long-term surgical, medical, functional, psychological, and financial outcomes of living kidney donation. Seven kidney transplant programs, representing six states (Arizona, Iowa, Maine, Massachusetts, New York, Rhode Island) and with experience and expertise in caring for living donors and transplant recipients, comprise the KDOC study collaborative.
Living kidney donors and their transplant recipients complete comprehensive assessments before surgery and at 1, 6, 12, and 24 months after kidney donation. A comparison group of healthy control subjects who did not donate a kidney also participate in the study. In addition to medical and surgical outcomes, we are evaluating donor pain and discomfort, quality of life, changes in the donor-recipient relationship, health behaviors, and indirect costs.
It is our hope that findings from the KDOC study will extend our earlier research by simultaneously examining outcomes that are of importance to donors, recipients, healthcare providers, and policymakers. Once these living kidney donor outcomes and their predictors are known, we can further develop and refine educational strategies and informed consent processes for both living donors and their intended recipients, as well as provide systematic data to inform policy discussions and clinical care practices.