Identifying the Unmet Healthcare Needs of Kidney Transplant Recipients Who Experience Graft Loss: Learning From Patients' Experience

Abstract

Background: Kidney transplant recipients with graft loss (KTR-GL) are an increasing group of patients whose care needs are largely unmet. The lack of patient perspectives is a key research gap. We conducted an in-depth exploration of the experiences of KTR-GL to identify their healthcare needs.

Methods: This qualitative study adopted an interpretive descriptive methodology. Data collection entailed semistructured narrative interviews conducted until data saturation was achieved and was analyzed using inductive thematic analysis.

Results: Our sample included 23 KTR-GL (women: 34.8%; mean age, 54.3 y). Six themes were identified that represent areas in which participants' needs may be inadequately acknowledged and/or met: (1) setting expectations (longevity of the graft, transplant is not a cure, risk of graft failure, anticipating transplant loss, and balancing hope and realism), (2) communicating with care team (support and empathy and clarifying the cause of graft failure), (3) support for transition to dialysis (shaped by prior experience, preparedness for the initiation of dialysis, lack of options, and dialysis requires adjustment), (4) navigating the path to retransplantation (understanding patient preferences, clarity and transparency, addressing ineligibility, preemptive transplant, and living donation), (5) psychosocial resources (access to psychological services, specific and adequate psychological support, reliable social worker, and peer support), and (6) lessons learned (building mutual trust, self-advocacy, defining a successful transplant, and gaining resilience).

Conclusions: In this in-depth exploration of the experiences of KTR-GL, we have identified several unmet healthcare needs that have practice and policy implications. Incorporating a patient-centered approach is needed to improve the healthcare experiences and, potentially, the outcomes of KTR-GL.