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Assessing quality of life in primary biliary cirrhosis

Lookup NU author(s): Dr Deborah Buck, Professor David Jones, Emeritus Professor Oliver James, Dr Ann Jacoby


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Background & Aims: Assessment of health-related quality of life (HRQOL) is not routinely reported in the literature on chronic liver disease (CLD). Few studies have examined quality of life (QOL) in patients with primary biliary cirrhosis (PBC) despite its significant functional impact. One of the reasons for the lack of HRQOL measurement in patients with PBC may be the absence of a well-recognized and widely used measure that clinicians can use in ordinary clinical practice. The aim of this study is to evaluate HRQOL measures used in patients with PBC and examine the suitability of the measures for these patients. Methods: A literature search identified reports that focused on any aspect of QOL in patients with PBC. Key texts were identified containing generic, domain-specific, and condition-specific measures. The identified measures were systematically evaluated for appropriateness, acceptability, reliability, validity, precision, and responsiveness. Results: Twenty measures were identified from 9 key texts. Six of the measures were previously validated generic measures; 10 were domain-specific measures previously used to measure fatigue, depression, and psychological distress in general and psychiatric populations; and 4 measures had been developed in patients with CLD. Reporting of reliability and validity generally was consistent for all measures used. However, reporting of the remaining criteria was variable, particularly in relation to responsiveness over time and acceptability of the measures to patients with PBC. Conclusions: A clearer and more rigorous approach is needed in reporting the properties of HRQOL measures used in patients with PBC to help clinicians decide which measures are most suitable for these patients.

Publication metadata

Author(s): Rannard A, Buck D, Jones DEJ, James OFW, Jacoby A

Publication type: Article

Publication status: Published

Journal: Clinical Gastroenterology and Hepatology

Year: 2004

Volume: 2

Issue: 2

Pages: 164-174

ISSN (print): 1542-3565

ISSN (electronic): 1542-7714

Publisher: WB Saunders Co.


DOI: 10.1016/S1542-3565(03)00323-9

PubMed id: 15017622


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Funder referenceFunder name
RB219688PBC Foundation, National Lottery Charities Board