Quality of Measurement Properties in Patient Reported Outcomes Used in Adult Liver Transplant Candidates and Recipients: a Systematic Review

Objective Patient Reported Outcome Measures (PROMs) are increasingly recognized in liver transplant (LT)-patients, yet recent evaluations of their quality are lacking. This systematic review gives a comprehensive overview of available PROMs in adults awaiting or undergoing LT and their measurement properties. Method A systematic search in MEDLINE, EMBASE, PubMed, and COCHRANE (01/2010–08/2023) included studies involving adult LT-candidates and/or recipients utilizing PROMs with original evaluations of measurement properties. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) was used to ascertain the quality of measurement properties. Results In total, 23 studies encompassing 35 PROMs were identified, including nine disease-specific and 26 generic PROMs. The (Short-form) Liver Disease Quality of Life ((SF-)LDQoL), Transplant Effects Questionnaire (TxEQ) and Post-Liver Transplant Quality of Life (pLTQ) were the most utilized disease-specific PROMs. Most studies demonstrated low-quality evidence for measurement properties. pLTQ demonstrated high-quality evidence for internal consistency, reliability, and responsiveness; the generic Hospital Anxiety and Depression Scale (HADS) showed strong evidence for internal consistency and construct validity. Conclusion Measurement properties in LT-patients remains of low-quality. pLTQ stands out for its superior methodological quality among disease-specific PROMs. For future studies, there is a strong recommendation to focus more on patients’ subjective measures and their measurement properties.