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Health-related quality of life questionnaires used in primary biliary cholangitis: a systematic review
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  • Xin Ai,
  • Xian Yang,
  • Jia-min Xu,
  • Wen-xia Yang,
  • Ying-Mei Tang
Xin Ai
The Second Affiliated Hospital of Kunming Medical University
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Xian Yang
The Second Affiliated Hospital of Kunming Medical University
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Jia-min Xu
The Second Affiliated Hospital of Kunming Medical University
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Wen-xia Yang
The Second Affiliated Hospital of Kunming Medical University
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Ying-Mei Tang
The Second Affiliated Hospital of Kunming Medical University,Yunnan Research Center for Liver Diseases
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Abstract

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.