413.3: Towards a National System of Living Donor Follow-up in Canada

Abstract

Introduction: Despite the provision of universal health care, there are several real or potential gaps in the post-donation care of living kidney donors in Canada. Health services are administrated by provincial governments and there is no national standard for living donor follow-up. In the absence of a national standard, transplant programs lack dedicated funding to ensure appropriate long-term follow-up of living donors and there is no mechanism to obtain national information about the health outcomes of living donors including death or kidney failure. Methods: We describe our ongoing work-plan to establish national consensus on the follow-up of living kidney donors in Canada and to establish funding for a new national system of living donor follow-up. This work was financially supported by Canadian Blood Services. The results of completed activities will be presented. Results: The work-plan includes: 1) An environmental scan of the current practice of living donor follow-up. This showed significant clinical practice variation between the 28 adult and pediatric kidney transplant programs. 2) A literature search to determine international models of living donor follow-up, which revealed significant international variation in practice and failed to identify a preferred model for implementation in Canada. 3) A survey of 685 living donors, which was undertaken to determine donors’ experience, needs, satisfaction and preferences for follow-up. The survey revealed that most (72%) of donors receive follow-up from a primary care physician, a minority (30%) of donors were dissatisfied with their follow-up, and two thirds endorsed life-long follow-up after donation. 4) A stakeholder conference including past donors, transplant professionals and researchers will be held in October 2022. This conference will include presentation of background information, breakout discussions led by facilitators and a plenary session in order to establish consensus recommendations on living donor follow-up including donor consent, essential data capture, and implementation recommendations. The workshop recommendations will also be used to produce a report. Finally, we plan to advance a business plan to implementation in all 28 kidney transplant programs. Conclusions: The presentation will summarize our workplan and findings to date. The information may be useful in other countries or regions considering establishment of living donor follow-up programs. This work was financially supported by Canadian Blood Services.