Partnering with Living Donors in the Development of Long-Term Follow-Up Data Collection Instruments

Patient-centered outcomes are increasingly recognized by the transplant community as a key component to improving knowledge and patient counseling, and long-term outcomes after living kidney or liver donation are not well understood. With efforts underway to follow living donors and donor candidates long term, it is critical that living donors and candidates drive the process of patient-centered data collection. Living donors on the Scientific Registry of Transplant Recipients' Living Donor Steering Committee were engaged to brainstorm and prioritize which data elements should be captured. Committee members identified long-term lab values, difficulty with normal activities, and diagnosis of chronic kidney or liver disease as critical long-term outcomes. Additional high-priority elements included short-term lab values, deaths related to donation, mortality among donors compared to nondonors, hospital readmissions, costs and physical limitations related to donation, and whether a donor would donate again. Finally, living donors wanted to know the risk of organ failure among donors compared to nondonors. This prioritization exercise provided valuable insights from living donors to help determine key themes and discrete data elements that should be prioritized for long-term collection and reporting to living donors and living donor candidates.