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Development, validation and evaluation of the PBC-40, A disease specific health related quality of life measure for primary biliary cirrhosis

Jacoby, A.; Rannard, A.; Buck, D.; Bhala, N.; Newton, J.L.; James, O.F.W. and Jones, D.E.J. (2005) Development, validation and evaluation of the PBC-40, A disease specific health related quality of life measure for primary biliary cirrhosis. Gut, 54 (11). pp. 1622-1629. ISSN 0017-5749

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Background & Aims: Study of health related quality of life (HRQOL) and the factors responsible for its impairment in primary biliary cirrhosis (PBC) has, to date, been limited. There is increasing need for a health-related quality of life (HRQOL) questionnaire which is specific to PBC. The aim of this study was to develop, validate and evaluate a patient-based, PBC-specific HRQOL measure. Subjects & Methods: A pool of potential questions was derived from thematic analysis of in-depth interviews carried out with 30 PBC patients selected to represent demographically the PBC patient population as a whole. This pool was systematically reduced, pre-tested, and cross-validated with other HRQOL measures in national surveys involving a total of 900 PBC patients, to produce a quality of life profile measure, the PBC-40, consisting of 40 questions distributed across six domains. The PBC-40 was then evaluated in a blinded comparison with other HRQOL measures in a further cohort of 40 PBC patients. Results: The six domains of PBC-40 relate to fatigue, emotional, social and cognitive function, general symptoms and itch. The highest mean domain score was seen for fatigue and the lowest for itch. The measure has been fully validated for use in PBC and shown to be scientifically sound. PBC patient satisfaction, measured in terms of the extent to which a questionnaire addresses the problems that they experience, was significantly higher for the PBC-40 than for other HRQOL measures. Conclusion: The PBC-40 is a short, easy to complete measure which is acceptable to PBC patients and has significantly greater relevance to their problems than other frequently used HRQOL measures. Its scientific soundness, shown in extensive testing, make it a valuable instrument for future use in clinical and research settings.

Item Type:Article
Additional Information:Published Online First: 16 June 2005.
Uncontrolled Keywords:primary biliary cirrhosis; health related quality of life; patient based measure; CHRONIC LIVER-DISEASE; SURVEY SF-36; FATIGUE; IMPACT; RELIABILITY; INSTRUMENT; TRIAL
Subjects:R Medicine > R Medicine (General)
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments, Research Centres and Related Units:Academic Faculties, Institutes and Research Centres > Faculty of Medicine > School of Population, Community & Behavioural Sciences
Publisher's Statement:This article has been accepted for publication in Gut following peer review. The definitive copyedited, typeset version Gut 2005;54:1622–1629. doi: 10.1136/gut.2005.065862 Copyright © 2005 BMJ Publishing Group Ltd & British Society of Gastroenterology, is available online at:
ID Code:273
Deposited On:15 Aug 2008 10:12
Last Modified:26 Apr 2012 10:10

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