Longitudinal Quality of Life and Glycemic Outcomes of Total Pancreatectomy With Islet Autotransplantation in Children With Chronic Pancreatitis Followed in a Pediatric Multidisciplinary Pancreas Clinic

ABSTRACT Background Total pancreatectomy with islet autotransplantation (TPIAT) is a potentially curative treatment for patients with chronic pancreatitis (CP) refractory to medical and endoscopic therapies. Patients often receive the initial follow‐up medical care at the surgery‐performing center, but then may follow up closer to where they live. We sought to describe the characteristics and outcomes of pediatric patients who underwent TPIAT at a national surgical referral center and were subsequently followed at our regional subspecialty center, the Children's Hospital Colorado. Methods We performed a retrospective analysis of baseline and outcomes data for the 10 pediatric patients who underwent TPIAT from 2007 to 2020 and received follow‐up care at our institution. Results All patients had a diagnosis of CP, and nine of 10 patients had an identified underlying genetic risk factor. Insulin usage was common immediately following TPIAT, but at 1 year of follow‐up, five of nine patients (55.6%) were insulin‐independent and nine of nine had an HbA1c below 6.5%. For the four patients on insulin 1 year after TPIAT, total daily insulin dose ranged from 0.06 to 0.71 units/kg/day. All patients who underwent mixed meal tolerance testing had a robust peak C‐peptide response at 1 year. There were significant improvements in nausea, school/work absences, narcotic dependence, and pancreas‐related hospital admissions 1 year after TPIAT. Conclusions Patients followed at our center had long‐term improvements with low‐insulin usage, detectable C‐peptide, and improved pancreatitis‐related outcomes after TPIAT. Pediatric patients who undergo TPIAT can be successfully co‐managed in conjunction with the original surgery‐performing center.