Background: Improved survival rates of liver transplantation (LT) (~80% 5-year survival) has shifted the focus towards reducing symptom burden and improving quality of life, which can be assessed using patient-reported outcome measures (PROMs). This study systematically reviewed measurement properties of PROMs to serve as an evidence base for the selection of suitable PROMs and offer new benchmarks for value-based health-care in LT.

Methods: MEDLINE, EMBASE, PubMed and COCHRANE databases were searched for relevant articles. Studies were included if they reported PROMs in LT candidates and/or recipients. Articles including patients <16 years only and clinician-assessed instruments were excluded. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to asses methodological quality of included studies and measurement properties.

Results: The full-texts of 185 out of 2040 studies were reviewed. The Short-Form-36 (SF-36) (n=86 studies) and Hospital Anxiety and Depression Scale (HADS) (n=16 studies) were the most commonly reported generic instruments in this population. Only 15 studies provided original measurement properties for 24 PROMs. Both SF-36 (n=2 studies) and HADS (n=2 studies) showed high quality evidence for sufficient internal consistency (Cronbach’s alpha >7.8 and >7.3, respectively), but indeterminate reliability. The Liver Disease Quality of Life Questionnaire and its short version ((SF-)LDQOL) were the most used disease-specific PROMs reported in LT candidates (n=8 studies), and showed moderate quality evidence for sufficient internal consistency and construct validity in 2 studies. Five individual studies reported newly developed PROMs for LT recipients, often incorporating questions from existing instruments. These showed generally high quality evidence and sufficient internal consistency.

Conclusion: In addition to well-established PROMs (SF-36 and HADS), we conclude that the (SF-)LDQOL is the most promising for the detection of disease-specific changes in LT candidates. However, this instrument should be evaluated further for LT recipients.