Caregiver perspectives of pre-transplant evaluation in children.

TitleCaregiver perspectives of pre-transplant evaluation in children.
Publication TypeJournal Article
Year of Publication2022
AuthorsSalmon EC, Barr LG, Hill DL, Shea JA, Amaral S
JournalPediatr Nephrol
Date Published2022 Jan 05

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. A higher resolution version of the Graphical abstract is available as Supplementary information.

Alternate JournalPediatr Nephrol
PubMed ID34985556
PubMed Central IDPMC8727489
Grant ListR01 DK120886 / DK / NIDDK NIH HHS / United States
R01 DK110749 / DK / NIDDK NIH HHS / United States
DK007006-46 / DK / NIDDK NIH HHS / United States
Center for Pediatric Clinical Effectiveness Pilot Grant / / Children's Hospital of Philadelphia /
R01 HD091185 / HD / NICHD NIH HHS / United States