100th TPIAT Surgery Marks Milestone, Restores Quality of Life After Pancreatitis
The Pancreas Care Center team at Cincinnati Children’s performed its 100th total pancreatectomy with islet autotransplantation (TPIAT) procedure in April 2022. This milestone is significant on many levels.
Cincinnati Children’s was the first pediatric medical center in the United States to have a pancreas center of excellence, as designated by the National Pancreas Foundation, for children. The Pancreas Care Center at Cincinnati Children’s Hospital Medical Center remains one of the few centers globally where pediatric-trained physicians and surgeons perform pediatric TPIAT procedures in patients as young as 3 years old when indicated.
A personalized approach combined with constant protocols and practice algorithms, development, refinement, updates and research allow Cincinnati Children’s to achieve excellent TPIAT patient outcomes, such as:
- 90% of patients no longer need pain medications three months after surgery.
- Deborah Elder, MD, endocrine director of the Pancreas Care Center, has her team working tirelessly to achieve the best possible diabetes management. In summary, a year after surgery:
- 30% of patients no longer need insulin.
- Half of the patients require very low insulin.
- Only 20% of patients need full insulin coverage.
- Most patients leave the hospital two to three weeks after surgery.
“Our philosophy is that you improve patient care by merging it with innovative research,” says Maisam Abu-El-Haija, MD, MS, medical director of the Pancreas Care Center.
An Extensive Team Approach
Pancreatitis causes debilitating pain. Children often cannot attend school or take part in activities as simple as going on a vacation or eating birthday cake. TPIAT eases the severe pain caused by relapsing pancreatitis and allows children to return to normal activities, while they deal with manageable diabetes.
The TPIAT procedure removes the pancreas and reconstructs the gastrointestinal tract. The two-part operation also transplants islet cells isolated from the pancreas into the liver to allow the body to make insulin when they cells engraft.
The first TPIAT was performed in a child at the University of Minnesota in 1989. Cincinnati Children’s Pancreas Care Center was founded in 2012. Abu-El-Haija and colleagues formed a team that took three years to develop protocols before performing their first TPIAT in 2015.
“When we started, we had to be creative. There was no other model,” Abu-El-Haija says. “We built it on the Cincinnati Children’s core values, the best model of care.”
Every step in the process is important, Abu-El-Haija says. And having all services concentrated in one place means a lot to patients and families.
Complex care requires an extensive team:
- Endocrinology
- Endoscopy
- Gastroenterology
- Genetics
- Infectious disease
- Nutrition
- Pain management
- Social work
- Surgery
The team approach is what enables Cincinnati Children’s to fully care for pediatric pancreas patients.
“The pancreas affects so many aspects of the body,” Abu-El-Haija says. “We have team members who are not afraid to come up with something different when creativity is needed to optimize the patient’s experience.”
Islet Cell Isolation, Transplantation
When the pancreas is removed, the chronic inflammation that causes pain is removed, too, says Juan Gurria, MD, MSc, director of Surgical Critical Care.
The islet transplantation is directed to prevent consequences of brittle diabetes. After removal, the pancreas is sent to the islet lab, currently located in close proximity to the medical center, where islet cells are isolated.
The pancreas is essentially digested with enzymes. This sensitive process allows the islet cells to be teased out of the tissue. The process takes about four hours.
The harvested islet cells are then injected into a vein that leads to the liver. The cells implant into the liver and settle into their new home. During that time, physicians monitor the child’s glucose and oxygen levels to prevent degradation of the islet cells. Islet cells are very sensitive to a lack of oxygen and glucose swings in the body.
The cells eventually begin to produce insulin so that the body can break down sugars.
Constant Program Innovation and Improvement
The pancreas team developed standardized criteria to understand which patients will benefit from TPIAT. The team develops an individualized care pathway for each patient. Each pathway reflects the patient’s lifestyle and holistic needs.
Cincinnati Children’s receives over 100 referrals for TPIAT a year. The pancreas team performs 20 to 25 TPIAT procedures a year.
Cincinnati Children’s follows its TPIAT patients for as long as needed, taking ownership of patients’ care regardless of where they are from geographically, Abu-El-Haija says.
These patients and their families are partners in continuing to grow and improve the TPIAT program. They share feedback and help plan and deliver education about TPIAT to new families facing the procedure.
The TPIAT program at Cincinnati Children’s includes three surgeons, dedicated to caring for these children. The time to discharge has decreased from a month hospitalization at the start to a couple of weeks, says Rachel Ellison, DNP, RN, CPN, clinical program manager.
Ongoing Research
What makes the TPIAT program so successful is constant review of our processes and outcomes, says Abu-El-Haija and her colleagues.
David Vitale, MD, pediatric gastroenterologist, says the Pancreas Care Center team works continually to advance the fields of pediatric pancreatology and TPIAT. They are involved in and lead several multi-center studies, have developed clinical protocols which are used nationally, and have multiple research grants funded by the National Institutes of Health (NIH) and the National Pancreas Foundation.
“This translates to cutting edge, top of the line pancreas and surgical care for our patients with continued evolution of our clinical approach and protocols,” Vitale says.
Cincinnati Children’s TPIAT protocols and standards of care are backed by research. Innovation drives changes that are made as needed.
Current research focuses on:
- An NIH-funded study of acute pancreatitis
- Identifying biomarkers to quantify chronic pancreatitis
- Pancreas function studies
- Studies of islet cell function protocols
In addition, fellows work within the Pancreas Center and as part of the TPIAT team to not only learn the procedure but also to help further research within the subspecialty.
Enabling a Return to Normal Life
The most rewarding part of the TPIAT program is seeing patients and families after treatment and watching the children able to simply be kids. Angie Turner, MSN, RN, CPN, says the goal for the Pancreas Care Center team is that “our patients and families can live and enjoy life without the challenge of wondering when their child will have their next pancreatitis attack.”
Before surgery, Turner often hears from parents when they are on the way to the emergency room again because their child is in unbearable pain from pancreatitis. After TPIAT surgery, she “doesn’t hear from families as often, which is good news.”
“When I do hear from them, it is about going to the prom, riding a horse, playing soccer again, getting a job and spending a night at their friend’s house,” Turner says. “These are all normal childhood activities and now they can fully participate and enjoy.”
Tom Lin, MD, director of Endoscopy and associate director of the Pancreas Care Center, says he thinks about the care he would want his own child to receive if they had a debilitating illness such as chronic pancreatitis.
“This motivates me to provide the best care that I’m capable of providing to my patients while also caring for the emotional aspects of their parents,” Lin says. “These efforts at times can be extensive, but in the end, they are well worth the effort.”
The program receives lots of thank you cards, notes and pictures of patients living life after surgery. Some of the comments received from families include:
- Thank you for giving me back my child.
- Today is the one-year anniversary of his TPIAT surgery. I cannot thank all of you enough for where we are today. He is eating like a typical teenager, attending school, and as of two weeks ago, riding his own horse daily.
- We’re so grateful that we learned about your program and traveled the distance to undergo the care you’ve been able to provide to my child.
- Your team is tremendous in the care they provide.
- We want to share this with the team that gave our daughter her life back. It is hard to believe she was ever sick a day in her life. She was voted to Freshman Homecoming Court. She found a glittery hand sanitizer cover to bling out her insulin pump. Thank you for giving her back her spark! I know nothing will ever hold her back.
- You’ve made a world of difference to my child’s life.
