Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease
- aDepartment of Gastroenterology, The Cleveland Clinic Foundation, Cleveland, Ohio, USA, bDepartment of Biostatistics, The Cleveland Clinic Foundation, Cleveland, Ohio, USA, cDepartment of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada
- Dr Z M Younossi, The Cleveland Clinic Foundation, Department of Gastroenterology, Desk S-40, 9500 Euclid Avenue, Cleveland, OH 44195, USA.
- Accepted 17 February 1999
BACKGROUND AND AIMS To develop and assess a disease specific instrument for measuring health related quality of life (HRQL) in patients with chronic liver disease (CLD).
METHODS Based on responses from 60 patients with chronic liver disease, from 20 liver experts, and from a Medline search of the literature, items potentially affecting the HRQL of these patients were identified. A separate sample of 75 patients identified which items they found problematic and rated their importance. Results were explored using factor analysis; domains were chosen and items placed within domains. Redundant questions were eliminated and the final questionnaire was pretested in 10 patients. Using this instrument, HRQL was assessed in a further 133 patients with various types and stages of liver disease.
RESULTS Patients, experts, and the literature search identified 156 items of potential importance. Of these, 35 proved important to over 50% of 75 respondents in the item reduction sample. The factor analysis suggested six domains. After eliminating redundancies, the Chronic Liver Disease Questionnaire (CLDQ) included 29 items in the following domains: fatigue, activity, emotional function, abdominal symptoms, systemic symptoms, and worry. In pretesting, patients found the CLDQ clear and easy to complete in 10 minutes. In another 133 patients, the CLDQ showed a gradient between patients without cirrhosis, Child’s A cirrhosis, and those with Child’s B or C cirrhosis. CLDQ has evidence for moderate reliability at six months and seems to be responsive.
CONCLUSION The CLDQ is short, easy to administer, produces both a summary score and domain scores, and correlates with the severity of liver disease.
- Abbreviations used in this paper:
- chronic liver disease
- Chronic Liver Disease Questionnaire
- global rating of change
- hepatitis B virus
- hepatitis C virus
- health related quality of life
- primary biliary cirrhosis
- primary sclerosing cholangitis