Estella M. Alonso

Key Points 1. The measurement of health-related quality of life (HRQOL) in children must be performed with instruments that are sensitive to developmental changes and that include assessments of domains of function that are specific to childhood. 2. Pediatric liver transplant recipients report HRQOL outcomes that are lower than normative samples. Although both physical function and psychosocial function are reported to be lower, the largest differences are observed in the area of school functioning. It is yet unknown whether these differences are related to an increased prevalence of developmental delays or learning disabilities in this population. It is also possible that missing days of school because of illness or visits to doctors may play an important role. 3. The impact of variables such as age and the interval from transplantation on HRQOL in this population has not been fully examined. However, it appears that age at the time of testing may have an impact, with lower function observed in older children. Liver Transpl 15:S57–S62, 2009. © 2009 AASLD.

Cognitive development and school function are important psychosocial outcomes that should be monitored closely in children following transplantation. This review includes discussion of a small number of studies published within the past year and details future directions in this area of research. An analysis of school-aged kidney transplant recipients revealed normal intelligence, but suggested significant impairment in gross motor and fine motor skills. Another study of adults who received kidney transplantation as children revealed that these patients rated their quality of life relatively high despite ongoing medical problems, delayed educational goals and a higher rate of unemployment than the general population. Psychoeducational outcomes of 30 pediatric liver transplant recipients who had onset of chronic liver disease in early infancy revealed that 27% of the group had intelligence scores that were more than 2 standard deviations below test norms. Progress in studying these outcomes in heart and intestinal transplant recipients has been slow and there was no new report published in this time frame. There are considerable gaps in our knowledge of these types of outcomes, but current studies support neurocognitive delay as an important problem for children receiving organ transplantation.