Background:

In order to even the playing field for patients without liver disease that nevertheless are in urgent need for a liver graft the United Network of Organ Sharing (UNOS) has established a system of “automated” Pediatric End Stage Liver Disease (PELD) or Model for Endstage Liver Disease (MELD- for patients above 12 years)exceptions for certain groups that includes patients needing combined liver and intestinal transplant, specific metabolic disorders (MD) that are associated with childhood morbidity and mortality and hepatoblastoma. In this study we determined how wait times compare between the largest group with chronic liver disease (biliary atresia, BA) that do not receive automatic exceptions and patients with exception for MD and patients who died on the wait list.

Method:

Review of single center data from the Transplant Institute at the MedStar Georgetown University Hospital which includes data from UNOS. Patients were included from 2005 to 2017 inclusive to encompass the time that the UNOS rules have been in place.

Results:

Data on 44 children with MD were compared with 64 BA patients who had undergone transplantation from a total of 268 transplants with 40 who had died on the wait list. The men ages of the groups differed. The BA group was younger at transplantation, mean 1.58 (2.87) years, than the MA group 4.57(4.61) years, p=0.00, but similar to the patients who died 2.31 (3.76) years p=0.34. The calculated terminal PELD scores were the highest for the patients that died, median 31 as compared to the BA group, median 15 (p=0.00). The difference between the BA group and MA, median -6 was also statistically significant (p=0.00). Wait times were very similar between the BA, median 86 days and MA group, median 97 days, p=1.00. These wait times were much greater than the patients that died, median 52. The differences did not reach statistical significance, p=0.67, p=0.055 respectively. Of the patients who died only 4 had BA as an underlying diagnosis and 1/4 was a retransplant. The majority were patients awaiting combine liver and bowel transplantation.

Conclusion:

PELD exceptions for severe MD do even out the wait time for these children in comparison with BA patients. Deaths of patients on the wait list are related to severity of the underlying liver disease rather than time on the wait list.

CITATION INFORMATION: Khan K., Desai C., Thomas F., Alexander K. Wait Times for Pediatric Liver Transplantation and the Impact of PELD/MELD Exception Am J Transplant. 2017;17 (suppl 3).

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