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

Abstract

Background: The long-term follow-up of living kidney donors is highly variable in Canada. Methods: We surveyed perspectives on post-donation follow-up among 685 living donors in the two largest transplant programs in Canada (43% survey response rate). The anonymous survey was informed by semi-structured interviews with 12 living kidney donors. The survey was developed based on themes identified in the semi-structured interviews, guidance from the research and clinical teams, and feedback from pilot testing with six previous donors. Results: Most (73%) 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 life-long 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 post-donation 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.