Background: Over the last several years there have been developments in the management of infants with short bowel syndrome. In particular manipulation of the components of parenteral nutrition may have led to a reduction in liver disease development and progression in these individuals. Here we examine the changes that have occurred in intestinal transplantation practice in children and how these changes may be related to management of intestinal failure in early childhood. 

Method: We reviewed the data of the united network of organ sharing (UNOS) which represents the largest single data source in the United States. We evaluated trends in waiting list and transplantation and outcomes in a convenient sample from 2006-2011. We focused on pediatric patients in two groups as per the UNOS schedule, <1 year of age and 1-5years.

Results: During the study period new referrals for intestinal transplantation declined gradually, in patients < 1 year from 103 to 32 cases (Figure 1) and in patients between 1-5 years from 70 to 33 cases. The numbers of patients on the waiting list during this time were steady in patients < 1 year apart from the most recent year (range 70-33). In the children between 1-5 years there was a gradual increase from 27 to 47 patients on the waiting list. The median waiting time for intestinal transplant increased dramatically for pediatric patients from < 7 months to approximately 15 months in the overall pediatric patient group. By comparison there was almost no change in the median waiting time for adults. The waitlist mortality remained highest in < 1 year age group while there was a gradual reduction in 1-5 year age group from 357.7 to 35.3 deaths/1000 patient years. The waitlist mortality rates declined proportionately for adults and children (<18 years of age) during the study time period.

There was a reduction in the number of transplants for patients <1 year,  31 down to 10 and in the 1-5 year age group the numbers were stable apart from a the last two years when there was a reduction (Figure 1).

Comparing isolated intestinal transplants with those that received a liver and intestinal graft there was a reversal from 2007 onwards when the number of combined liver and intestinal transplants dropped dramatically from approximately 140/ year to approximately 50/year while the number of isolated intestinal transplants increased during the same time period. Patient and graft survival for isolated small bowel transplants and liver intestinal transplants did not alter significantly at 1 and 3 year mark in the different age groups during this time.

Conclusion: Pre transplant care of pediatric patients on parenteral nutrition has likely resulted in a decrease in the number of new patients being referred for transplantation. In addition patients have been able to survive longer on the waiting list and are less likely to require a liver in addition to the intestinal graft.