Abstract

Primary biliary cirrhosis (PBC) is the second most common reason for liver transplants among women in the USA. While survival rates are high, there is evidence of persistent problems post-transplant. This study aimed to identify significant contributors to quality of life (QOL) for women with PBC on waiting list (WL) and post-transplant (PT) and compare QOL in each group with US population norms. A cross-sectional, two-group study design was used. WL and PT participants were recruited through medical centres and on-line. QOL was measured by the Short Form-36 and an indicator of Social QOL created for this study. A biopsychosocial model incorporating demographic, biomedical, psychological, and sociological factors guided choice of variables affecting QOL. Analyses examined (1) all factors for differences between WL and PT groups, (2) association between factors and QOL outcomes within each group, (3) multivariate regression of QOL on factors in the model for the sample as a whole, and (4) comparison of QOL outcomes with national norms. One hundred women with PBC participated in the study, 25 on WL and 75 PT. Group comparisons showed improvement for PT participants in most biomedical and psychological variables and in QOL outcomes. QOL was related to many, but not all, of the variables in the model. In multivariate analysis, Fatigue, Depression, Coping, and Education - but not Transplant Status - were identified as indicators of QOL. Physical QOL improved significantly after 5 years PT, when it was no longer worse than national norms. Mental QOL remained worse than national norms despite distance in time from transplant. The model proved useful in identifying a range of factors that contributed to QOL for women with PBC before and after transplant. Recommendations were made for clinical practice to improve QOL through a combination of treatment and self-management.

Full Text
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