Critical Factors Associated with Missing Follow-Up Data for Living Kidney Donors in the United States

Follow-up care for living kidney donors is an important responsibility of the transplant community. Prior reports indicate incomplete donor follow-up information, which may reflect both donor and transplant center factors. New UNOS regulations require reporting of donor follow-up information by centers for 2 years. We utilized national SRTR data to evaluate donor and center-level factors associated with completed follow-up for donors 2008-2012 (n=30026) using multivariable hierarchical logistic models. We compared center follow-up compliance based on current UNOS standards using adjusted and unadjusted models. Complete follow-up at 6, 12, and 24 months was 67%, 60%, and 50% for clinical and 51%, 40%, and 30% for laboratory data, respectively, but have improved over time. Donor risk factors for missing laboratory data included younger age 18-34 (adjusted odds ratio [AOR]=2.03, 1.58-2.60), black race (AOR=1.17, 1.05-1.30), lack of insurance (AOR=1.25, 1.15-1.36), lower educational attainment (AOR=1.19, 1.06-1.34), >500 miles to center (AOR=1.78, 1.60-1.98), and centers performing >40 living donor transplants/year (AOR=2.20, 1.21-3.98). Risk-adjustment moderately shifted classification of center compliance with UNOS standards. There is substantial missing donor follow-up with marked variation by donor characteristics and centers. Although follow-up has improved over time, targeted efforts are needed for donors with selected characteristics and at centers with higher living donor volume. Adding adjustment for donor factors to policies regulating follow-up may function to provide more balanced evaluation of center efforts. This study demonstrates significant variation in living kidney donor follow-up information explained by donor characteristics and individual transplant centers that has important implications for interventions to improve follow-up as well as for evaluating center compliance with UNOS regulations.