Psychosocial outcome in liver transplanted children was primarily investigated in terms of health related quality of life (HRQOL). In children this multidimensional construct additionally accentuates domains like school, family, and peers as well as physical and cognitive-emotional development.
Although organ transplantation is lifesaving, recipients trade a terminal illness for a chronic syndrome with good organ function in most cases, however. Nevertheless, restoration of organ function does not involve return to a normal life. It is characterized by fear of organ failure and complications, side effects of the medication, developmental deficits, and psychiatric comorbidities. Liver transplanted children show a poorer HRQOL compared with the healthy population, equal to or better than in children with other chronic diseases. Factors associated with decreased HRQOL include: comorbidity, older age at transplantation, medication side effects, and parental conflict. Two specific problems in pediatric organ transplantation are adherence to medication and transition from pediatric to adult transplant care. Early disease onset, poor nutritional status, growth deficits, and longer duration of illness prior to transplant have been identified as factors contributing to an adverse cognitive development of these children.
Studies are heterogeneous regarding operationalization of HRQOL, study design, length of follow-up, and age of the children. There are only few prospective multi-center studies, which should be encouraged in future research including specific internationally accepted validated instruments.
Against the background of a new era of immunosuppressive therapy (steroid minimization, individualized therapy), a better long-term outcome in these children could be expected.