Neuropsychological functioning and health-related quality of life in pediatric liver disease: the sum of our perspectives is greater than each alone.

Abstract

The review will discuss current data on neuropsychological and health-related quality of life (HRQOL) outcomes in children with liver disease. Research has trickled in over the past 30 years, mostly in small, single-center studies with observational or retrospective design. As medical treatment has advanced, survival has improved dramatically, with the majority now living into adulthood. The focus is shifting toward more systematic exploration of functional outcomes. Contemporary cohorts provide evidence for increased prevalence of IQ deficits despite overall average means in children with end-stage liver disease and long after transplant. Recent studies explore specific neurocognitive domains and populations, such as pediatric acute liver failure and metabolic disorders. HRQOL is reduced in pediatric liver transplant recipients, even years later. Current research examines HRQOL in pediatric acute liver failure, infants with chronic liver disease, and specific diseases. A major psychosocial concern is the transition from pediatric to adult care, and the challenges in assessing transfer readiness. As research in functional outcomes becomes more sophisticated (more prospective, controlled, and multisite studies), richer data are available. The most comprehensive understanding of how children with liver disease fare is achieved by integrating perspectives into one picture painted by many.