Abstract
Objective
The purpose of this systematic review was to assess the suitability of health-related quality of life (HRQOL) questionnaires in patients with primary biliary cholangitis.
Methods
Relevant studies were compiled from a search of five electronic databases. The properties under investigation included the validity of the translated questionnaires, floor and ceiling effects, internal consistency and test-retest reliability.
Results
Forty-four studies were included, from which fifteen HRQOL questionnaires were identified. The most frequently used instruments were the PBC-40 (n = 22), the SF-36 (n = 19), the PBC-27 (n = 4), the CLDQ (n = 3) and the NIDDK-QA (n = 2). The remaining instruments were used only once. Twenty-six studies used a translated HRQOL questionnaire, but only six reported or referenced validating the translated questionnaire.
Conclusions
PBC-specific HRQOL questionnaires generally have good psychometric properties. However, many studies have directly applied HRQOL tools without verifying their validity and reliability in PBC patients. There was no clear indication that one HRQOL tool was superior to another, although the PBC-40 is the most well-studied. Thus, more robust psychometric studies are needed to investigate the measurement properties of HRQOL questionnaires.
Disclosure statement
The author(s) have no conflict of interest to declare.
Author contributions
X.A. contributed significantly to the conception and design of the study, data extraction, critical appraisal, interpretation of data and drafting of the manuscript. X.Y. and J.-M.X. were involved in literature search, critical appraisal and interpretation of data and drafting. H.-Y.F. was involved in critical appraisal and drafting. Y.-M.T. was involved in the drafting and review of the manuscript. All authors have given their final approval on the manuscript to be published.