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. 2023 Sep;32(9):2435-2445.
doi: 10.1007/s11136-023-03405-1. Epub 2023 Apr 6.

Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review

Ali Vedadi  1 , Roula Khairalla  1 , Adrian Che  1 , Ahsas Nagee  1 , Mohammed Saqib  1 , Ali Ayub  1 , Aghna Wasim  1 , Sara Macanovic  1 , Ani Orchanian-Cheff  2 , Nazia Selzner-Malekkiani  1 , Susan Bartlett  3   4 , Istvan Mucsi  5   6
Affiliations

Patient-reported outcomes and patient-reported outcome measures in liver transplantation: a scoping review

Ali Vedadi et al. Qual Life Res. 2023 Sep.

Abstract

Introduction: Generic or condition-specific Patient-reported Outcome Measures (PROMs) are used to measure physical, mental, and social aspects of health to promote patient-centered care. This scoping review aims to identify and summarize generic and condition-specific PRO domains and PROMs that have been assessed and used in liver transplant (LT) candidates and recipients.

Methods: We searched Medline, Embase, Cochrane Database of Systematic Reviews and Register of Trials, PsychInfo, and CINAHL from inception to 08/26/2020. Included studies addressed a PRO or PROM in LT candidates or recipients.

Results: After screening, 341 studies yielded 189 unique PRO domains. Mental health domains (depression, anxiety, and guilt) were most frequently assessed, followed by domains of physical and social health. Fifty-one generic and three condition-specific unique PROMs were identified, with only 13% (n = 45) of studies including condition-specific tools.

Discussion: The most frequent PROMs were the SF-36, Nottingham Health Profile, Hospital Anxiety and Depression Scale, followed by the Liver Disease Quality of Life (LDQoL). Very few studies used transplant-specific PROMs, which may partly be related to the scarcity of LT-specific instruments. We will use these results in future qualitative research to identify PROs and PROMs to build an electronic PROM toolkit to facilitate patient-centered LT care.

Keywords: Liver disease quality of life (LDQoL); Liver transplant; Patient-reported outcome measures (PROM); Patient-reported outcomes (PRO); Quality of life.

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