Psychosocial, cognitive, and quality of life considerations in the child with liver disease and their family

Morbidity associated with chronic liver disease affects the psychosocial and health-related quality of life (HRQOL) of patients and their families. Pediatric patients with liver disease demonstrate deficits in IQ that typically persist even after liver transplantation. This may be related to prolonged hospitalizations and malnutrition that often occur in this population. Research on other cognitive domains are ongoing but have demonstrated similar deficits. The chronicity of liver disease negatively affects both patients and their families through frequent hospitalizations and procedures as well as emotional and behavioral problems at home. HRQOL remains below that of the general population with school function of particular concern. Use of different tests based on age, small sample sizes, and heterogeneous study designs has made the accurate assessment of these outcomes very challenging. In this chapter, we present a summary of what is known regarding psychosocial, cognitive, and HRQOL outcomes of children with liver disease and describe approaches to better measure, study, and improve these outcomes.