Health Related Quality of Life, Education and Employment

Liver diseases can be associated with significant morbidity which, added to the physical, emotional, social and cognitive development changes, and unique challenges faced by adolescents, may negatively impact their quality of life. Using different quality of life instruments, data to date suggests impairments in the quality of life of children and adolescents with liver disease and after liver transplantation when compared to healthy controls, except for subjects with biliary atresia with their native liver in whom findings have been inconsistent. Among adolescents with liver disease, subjective disease state rather than disease severity appears to be an important determinant of health-related quality of life. Outcomes of education and employment have been scarcely studied and further work needs to be done to understand the full burden of disease in adolescents. In doing so, we will be able to effectively intervene in supporting young people in reaching their full social, academic and professional potential.KeywordsAdherenceAcademic potentialDisease burdenFatigueItchingPatient-reported outcomesPatient perspectiveQuality of LifeSchool functioning