Perspectives and experiences of kidney transplant recipients with graft failure: A systematic review and meta-synthesis

Background: Kidney transplant recipients with graft failure are a rapidly rising cohort of patients who experience high morbidity, mortality, and fragmented transitions of care between transplant and dialysis teams. Current approaches to improving care focus on medical and surgical interventions, increasing re-transplantation, and improving coordination between treating teams with little understanding of patient needs and perspectives. Methods: We undertook a systematic literature review of personal experiences of patients with graft failure. Six electronic and five grey literature databases were searched systematically. Of 4664 records screened 43 met the inclusion criteria. Six empirical qualitative studies and case studies were included in the final analysis. Thematic synthesis was used to combine data that included the perspectives of 31 patients with graft failure and 9 caregivers. Results: Using the Transition Model, we isolated three interconnected phases as patients transition through graft failure: shattering of lifestyle and plans associated with a successful transplant; physical and psychological turbulence; and re-alignment by learning adaptive strategies to move forward. Critical factors affecting coping included multi-disciplinary healthcare approaches, social support, and individual-level factors. While clinical transplant care was evaluated positively, participants identified gaps in the provision of information and psychosocial support related to graft failure. Graft failure had a profound impact on caregivers especially when they were living donors. Conclusions: Our review reports patient-identified priorities for improving care and can help inform research and guideline development that strives to improve the care of patients with graft failure.