Background: Although U.S. transplantation programs must submit living-donor follow-up data through 2 years after donation, the submissions have high rates of incomplete or missing data. It is important to understand barriers programs face in collecting follow-up information.
Methods: Two hundred thirty-one programs performing living kidney donor (LKD) and/or living liver donor (LLD) transplantation were contacted to complete a survey about program attitudes concerning donor follow-up, follow-up practices, and barriers to success.
Results: Respondents representing 147 programs (111 with only LKD and 36 with both LKD and LLD) participated. Sixty-eight percent of LKD and 83% of LLD respondents said that achieving follow-up was a high priority. The majority agreed that donors should be followed at least 2 years (61% LKD programs and 73% LLD programs), and sizeable percentages (31% LKD and 37% LLD) endorsed 5 years of follow-up. However, approximately 40% of programs lost contact with more than 75% of their donors by 2 years after donation. Follow-up barriers included donors not wanting to return to the program (87%), out-of-date contact information (73%), and lack of program (54%) or donor (49%) reimbursement for follow-up costs. Whereas 92% of LKD and 96% of LLD programs inform potential donors about follow-up requirements, fewer (67% LKD and 78% LLD) develop plans with donors to achieve follow-up.
Conclusions: Most respondents agree that donor follow-up is important, but they report difficulty achieving it. Improvements may occur if programs work with donors to develop plans to achieve follow-up, programmatic standards are set for completeness in follow-up data reporting, and sufficient staff resources are available to ensure ongoing post-donation contact.