Quality of life after pediatric intestinal transplantation: the perception of pediatric recipients and their parents.

The objective was to examine the perception of physical and psychosocial functioning of pediatric intestinal transplant recipients who are beyond the perioperative period and compare these with normal and chronically ill children. Child and parent forms of the Child Health Questionnaire were administered to all 29 pediatric intestinal transplant recipients between the ages of 5 and 18 years who had had a small bowel transplantation 1 year previous and had a functional allograft. Comparison was made with published norms and scores for pediatric patients on hemodialysis. Intestinal transplant recipients (on average 5 years after intestinal transplantation and at a mean age 11 years) reported similar scores in all domains compared with normal children. Parents of intestinal transplant recipients noted decreased function in several domains related to their child's general health, physical functioning, and the impact of the illness on parental time, emotions and family activities. Intestinal transplant recipients beyond the perioperative period perceive their physical and psychosocial functioning as similar to normal school children. Parental proxy assessments differ from the recipients, with the parent's perception of decreased general health and physical functioning for intestinal transplant recipients compared with norms.