Few studies have examined health-related quality of life (HRQOL) in patients with primary biliary cirrhosis (PBC).
This may be because there is not a well-recognized and widely used measure for clinicians to use in ordinary clinical practice.
In this study, doctors from England evaluated the HRQOL measures used in patients with PBC. The team assessed the suitability of these measures for patients with PBC.
The team performed a literature search to identify reports that focused on any aspect of quality of life in patients with PBC.
Once identified, the measures were evaluated for appropriateness, acceptability, reliability, validity, precision, and responsiveness.
The team identified a total of 20 measures. Of these, 6 were previously validated generic measures. A further 10 were domain-specific measures previously used to measure fatigue, depression, and psychological distress in general and psychiatric populations.
The team identified 4 measures which had been developed in patients with chronic liver disease.
|Reporting of reliability and validity generally was consistent.|
|Clinical Gastroenterology and Hepatology|
They established that reporting of reliability and validity generally was consistent for all measures.
However, the reporting of the remaining criteria was variable. This variability was greatest in relation to responsiveness over time and acceptability of the measures to patients with PBC.
Dr Anne Rannard's team concluded, "A clearer and more rigorous approach is needed in reporting the properties of HRQOL measures used in patients with PBC".