Innovative Strategies Lead to Better Outcomes for Children After an Intestinal Transplant
Innovative strategies at Cincinnati Children’s are leading to better outcomes after intestinal transplant surgery — and helping some children avoid transplant altogether. Long-time medical director of the Intestinal Care Center, Sam Kocoshis, MD, elaborates.
What kind of outcomes are you seeing in children who have had an intestinal transplant at Cincinnati Children’s?
Dr. Kocoshis: Based on data from the United Network of Organ Sharing, our one-year survival rate from 2008 to 2020 was 86%, compared to a national average of about 75%. Our provisional five-year survival rate during that time period was 84%, while the national rate was about 75%.
Quality of life measures are important, too. By the 12- to 18-month post-surgery mark, most of our patients are eating by mouth (except those with a feeding aversion) and passing two to four stools a day. After 18 months, they are not experiencing any impediments to everyday life. They are in school, playing non-contact sports and engaging in other typical activities.
What are some of the strategies you use to treat patients with short bowel syndrome who may need a transplant?
Dr. Kocoshis: Our intestinal rehabilitation and transplant teams have been working together for almost 20 years to improve our processes and clinical protocols for patients with short bowel syndrome. As a result, many patients come off the transplant list and can be weaned from total parenteral nutrition (TPN).
For example, we use lipid-sparing protocols in a select group of patients on TPN. This has reduced the incidence of significant liver disease from 25% to 4%. And we established a protocol for outpatient management of fever in patients who have central lines. We shared this protocol with local emergency departments and have reduced the incidence of septic shock by 66%.
Our pediatric surgeons perform state-of-the-art intestinal reconstructive procedures, including bowel lengthening and tapering, to preserve bowel function and avoid transplant. And for the past few years, we’ve been using the hormone teduglutide, an analog of glucagon-like peptide 2 (GLP2), to improve intestinal rehabilitation.
How are you improving outcomes for children who progress to transplant?
Dr. Kocoshis: Two strategies are crucial for success. One is that prior to hospital discharge, we educate and train families to care for their child at home. The other is that we collaborate with referring physicians and incorporate their input and observations in the post-op period.
We’ve also created a “care passport” for each patient — it’s an invaluable resource for families and physicians that details all significant clinical events related to the patient’s intestinal transplant care. This passport leads to seamless care, whether a patient is at a routine follow-up appointment with their local gastroenterologist or a parent is talking to the gastroenterologist-on-call late at night.
We recently began prescribing two immunosuppression agents to minimize the development of donor-specific antibodies that can develop after transplant. And we are using tacrolimus in powder and capsule form rather than via suspension, which has led to more uniform blood levels.
What’s next for the intestinal rehabilitation and transplant programs?
Referrals are up, partly because fewer and fewer pediatric institutions offer the type of care our medically complex patients need. We have expanded our surgical and medical teams — in 2019, we hired a new transplant surgeon, bringing our total to three.
The goal is to keep improving. Our team is never satisfied with the status quo. We owe it to these kids and their families to continually improve our practices and strategies so that they can experience the best quality of life possible.
Kocoshis was the lead investigator on two clinical studies that led to the Food and Drug Administration’s approval of teduglutide therapy, including one published in May 2020.
(Published November 2021)
