Perspectives on Long-Term Follow-Up Among Living Kidney Donors

Key Points In a survey of 685 previous living kidney donors, donors wanted lifelong annual follow-up with a primary care provider. Living donors wanted information on clinical and laboratory assessment and health reassurance. Donors also wanted access to specialized care in the event of hospitalization or change in health. Background The long-term follow-up of living kidney donors is highly variable in Canada. Methods We surveyed perspectives on postdonation follow-up among 685 living donors in the two largest transplant programs in Canada (43% survey response rate). The anonymous survey was informed by semistructured interviews with 12 living kidney donors. The survey was developed on the basis of themes identified in the semistructured interviews, guidance from the research and clinical teams, and feedback from pilot testing with six previous donors. Results Most (73%) of the respondents received follow-up after the first donation year from a primary care provider, and 70% reported annual follow-up visits, including blood and urine tests. Most (71%) received a follow-up reminder from their transplant center, and follow-up was higher (86% versus 68%) among those receiving reminders. Donors wanted specialist involvement if new health or kidney-related events occurred. Most (70%) were satisfied with their follow-up, and 66% endorsed annual lifelong follow-up. Donors wanted more information about lifestyle and living donor outcomes and wanted to contribute to research to increase understanding of long-term donor health outcomes. Conclusions Donors wanted annual lifelong follow-up, including clinical assessment and laboratory tests, and more information about their postdonation health. A transplant center–led, primary care provider–administered model of long-term follow-up may best meet the care and information needs of most donors.