Caregiver perspectives of pre-transplant evaluation in children

BACKGROUND: Pre-transplant evaluation is mandated by Centers for Medicare and Medicaid Services, but there is wide institutional variation in implementation, and the family experience of the process is incompletely understood. Current literature largely focuses on adult transplant recipients. METHODS: This qualitative study begins to fill the knowledge gap about family experience of the pre-transplant evaluation for children through interviews with caregivers at a large pediatric transplant center. RESULTS: Prominent themes heard from caregivers include (1) the pre-transplant evaluation is overwhelming and emotional, (2) prior experiences and background knowledge frame the evaluation experience, and (3) frustration with communication among teams is common. CONCLUSIONS: These findings are relevant to efforts by transplant centers to optimize information delivery, minimize concrete barriers, and address healthcare systems issues. GRAPHICAL ABSTRACT: A higher resolution version of the Graphical abstract is available as Supplementary information [Image: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s00467-021-05354-8.