Introduction: The United Network for Organ Sharing (UNOS) collects data before and after intestinal transplantation (ITx) from all transplant centers across the United States. While much of the information is useful, it fails to capture other data that is interesting for physicians and surgeons involved in the care of ITx patients. We present the results of a major intestinal rehabilitation (IRP) and ITx program, focusing on data that is currently not captured by the UNOS database.

Methods: A retrospective review of all ITx (both isolated small bowel and multivisceral) performed at a regional referral pediatric IRP and ITx program between 2004-2019 was performed (n=18). Clinical, surgical, and outcomes data were collected. This study was approved by the Institutional Review Board (IRB #2019-2474). Solely data this is currently not collected in the UNOS ITx database is presented herein.

Results: 18 transplants (3 multivisceral) were performed. The most common indication for ITx was recurrent infections (either central line associated bloodstream infections or small bowel bacterial overgrowth: 12/18, (67%), either alone or combined with loss of vascular access. Intestinal failure associated liver disease was the indication for transplant in 5 patients, including all 3 multivisceral transplants. Loss of vascular access was the indication in one patient. Median time to starting enteral feeds after transplant was 16.5 days [6-210], and 56% (10/18) were discharged on full enteral feeds. Fourteen of 18 patients (78%) were weaned off parenteral nutrition at some point after their transplant. Median time to initially stopping parenteral nutrition after transplant was 74 days [32-244]. Most patients underwent stoma closure (12/18, 67%), and median time to stoma closure was 297 days [122-558]. One-year survival outcomes were 89% (16/18 patients) and 83% (15/18 grafts). Ultimately, 5 grafts had to be explanted. 4/5 patients who were explanted suffered from chronic rejection, which was caused by non-compliance in 2 patients.

Conclusion: National databases provide major post-transplant outcome measures. However, much pertinent clinical data that is important for ITx medical and surgical providers but also for patients and families is not collected. A better knowledge and understanding of granular pre- and post-transplant clinical and surgical data can help better counsel and prepare families before transplant.