Health-related quality of life questionnaires used in primary biliary cholangitis: a systematic review

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.

Keywords:

• Review
• primary biliary cholangitis
• health-related quality of life

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.

Additional information

Funding

This work was supported by the [National Natural Science Foundation of China #1] under Grant [number 81660102]; [Project of Science and Technology Innovation team in Colleges and Universities in Yunnan Province #2] under Grant [number 201701UH00618]; [Yunnan Health Science and Technology Program Project #3] under Grant [number 2017NS280]; and [Yunnan Provincial Science and Technology Department - Kunming Medical University applied basic research joint special fund project #4] under Grant [number (2018FE001 (-051)].