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Lookup NU author(s): Dr Rebeka Jenkins, Ben RimmerORCiD, Professor Andrew FisherORCiD, Professor Linda Sharp, Professor Catherine Exley
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
© 2024 The Authors. Background: Measures of patient experience are increasingly valued as key to healthcare quality assessment. We aimed to identify and describe publicly available measures assessing patient-reported experience of solid organ transplantation healthcare, and identify patient groups, healthcare settings, or aspects of patient experience underserved by existing measures. Methods: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus and Web of Science from inception to 6th July 2023; supplemented with grey literature searches. Two reviewers independently screened search hits; outputs reporting patient-reported measures of multiple aspects of established solid organ transplantation healthcare were eligible. We abstracted measure context, characteristics, content (i.e., attributes of patient experience assessed), and development and validation processes. Results: We identified nine outputs reporting eight measures of patient experience; these related only to kidney (n = 5) or liver (n = 3) transplantation, with no available measures relating to heart, lung, pancreas or intestinal transplantation. Of the identified measures, four were specific to solid organ transplant recipients. Measures sought to assess “patient satisfaction” (n = 4) and “patient experience” (n = 4) of healthcare. Measures mapped to between five and 16 of 20 attributes of patient experience, most often Information and education, Communication, and Access to care (all n = 7). Six measures reported a development process, only three reported a validation process. Conclusions: Publicly available patient-reported measures of organ transplantation healthcare experiences are limited to kidney and liver transplantation. There is heterogeneity in measure context, characteristics, and content, and insufficient clarity concerning how well measures capture the specific experiences of transplant recipients. Formalised measures of patient experience, specific to solid organ transplantation, with transparent reporting of development and validity are needed.
Author(s): Jenkins R, Rimmer B, Marson L, Fisher AJ, Sharp L, Exley C
Publication type: Review
Publication status: Published
Journal: Transplantation Reviews
Year: 2024
Volume: 38
Issue: 4
Print publication date: 01/12/2024
Online publication date: 15/07/2024
Acceptance date: 02/04/2018
ISSN (print): 0955-470X
ISSN (electronic): 1557-9816
Publisher: Elsevier Inc.
URL: https://doi.org/10.1016/j.trre.2024.100872
DOI: 10.1016/j.trre.2024.100872
