Abstract
BACKGROUND: Given the significant benefits of living donor kidney transplantation, the nephrology and transplant communities are augmenting efforts to increase living kidney donation. However, prior living kidney donors (LKDs) report suboptimal experiences and unmet care needs. The LKDs are healthy, and the vast majority have good outcomes post-donation. Thus, in clinical practice, their care is primarily assumed by practitioners, such as family physicians (FPs). OBJECTIVE: This study aimed to better understand the integration of primary care in LKDs' donation trajectory from the point of view of the latter. Our specific research questions were: (1) How do LKDs perceive the role of FPs currently integrated into the donation trajectory? (2) What are their needs and expectations from their FPs? DESIGN: An interpretive description methodology. SETTING AND PARTICIPANTS: Canadian LKDs who donated a kidney prior to 2020. METHODS: Qualitative interviews and inductive thematic analysis. RESULTS: In our sample of 49 LKDs who donated between 2007 and 2020, 61.2% were women and 87.8% were white. Also, 87.8% and 83.7% were attached to an FP pre- and post-donation (1 by a nurse practitioner) with 16.3% reporting no regular FP post-donation. Although participants provided varying accounts, an overwhelming majority described challenges with timely access to needed care; lack of cohesive continuity of care; variability in the services offered by FPs; and challenges with coordination of care between providers. Many reported poor coordination and communication between FPs and donor teams. Most articulated the desire to see an expanded role for FPs. This included improvements in knowledge regarding living donor care, information and care brokerage, continuous integrative care, and mental and emotional support. LIMITATIONS: Limited transferability of our findings to other countries with variable payment structures. CONCLUSIONS: Our work suggests that improving LKD care requires developing care pathways that facilitate donor transition and care coordination between donor teams and primary care practitioners. Given the challenges being faced by primary care in Canada, we believe that pragmatic strategies to better support primary care practitioners and a stronger integration of primary care with the living kidney donation process are essential. In addition, strategies to better support the mental health of LKDs are also needed. The LKDs provide a valuable gift to our health systems and to patients with kidney failure. It is our responsibility to optimize their experiences and improve their care.