Health-related quality of life questionnaires used in primary biliary
cholangitis: a systematic review
Objective The purpose of this systematic review was to assess the
suitability of HRQOL questionnaires in patients with primary biliary
cholangitis. Methods Five electronic databases were searched. The
validity of translated questionnaires, floor and ceiling effects,
internal consistency and test-retest reliability were investigated.
Results Forty-four studies were included, of which fifteen HRQOL
questionnaires were identified. The instruments used most frequently
were the PBC-40 (n = 22), followed by the SF-36 (n = 19), PBC-27(n=4),
CLDQ (n = 3) and NIDDK-QA(n=2), the remaining instruments were uesd only
once. Tweenty-six studies used a translated HRQOL questionnaire and only
six reported or referenced a validation of the translated questionnaire.
Conclusions PBC-specific HRQOL questionnaires used in primary biliary
cholangitis have generally good psychometric properties. But lots of
studies directly applied the HRQOL tools without verifying the HRQOL
tools validity and reliability in PBC patients. Thus, it is better for
clinicians and researchers to test the measurement properties of HRQOL
questionnaires before use it.