Selected Podcast

What’s New in the UF Pediatric Intestinal Rehabilitation Program

The panelists review common conditions leading to pediatric intestinal failure. They will also discuss the importance of multidisciplinary care that children receive as patients of the UF Pediatric Intestinal Rehabilitation Program.

What’s New in the UF Pediatric Intestinal Rehabilitation Program
Featuring:
Sam Cheng, MD, PhD | Conrad R. Cole, MD, MPH, MSc | Janice Taylor, MD, MEd, FACS, FAAP

Hi, my name is Sam Cheng, MD, MSc, PhD, and I am an associate professor for the department of pediatrics at the University of Florida College of Medicine. I earned my medical degree and master's degree in clinical investigation from Tongji Medical University in China, and then trained in molecular biology and genetics while being a World Health Organization fellow at the Great Ormond Street Hospital/Child Health Institute in London. I also completed my doctoral degree in ion transport physiology and biochemistry at Karolinska Institute in Stockholm, Sweden. I completed pediatric residencies at Tongji Hospital in Wuhan, China, and at SUNY Downstate Medical Center in Brooklyn, New York. As a postdoctoral fellow at Yale University in Connecticut, I expanded my training in fluids, electrolytes, and nutrition and calcium-sensing receptor physiology and pathology in relation to diarrhea, inflammatory bowel disease and neuro-gastrointestinal diseases in children. I am board-certified in pediatrics and pediatric gastroenterology. My work and research have resulted in multiple awards, grants, patents and published articles in the Journal of Clinical Investigation, Gastroenterology, the Proceedings of the National Academy of Sciences and the American Journal of Physiology. My current work builds on my prior work and training in combination with my current interests as a GI physiologist and pediatric gastroenterologist. I am particularly interested in pediatric nutrition, inflammatory bowel disease, short bowel syndrome, irritable bowel syndrome and other diarrheal disorders in children. I also help run UF pediatric short bowel clinic and the UF pediatric anorectal manometry program. 


My clinical and research interests focus on improving outcomes for children with intestinal failure, as well as studying the epidemiology of micronutrient deficiencies in this population and at-risk minority children. I am also interested in identifying and researching potential agents, such as GLP-2 analogs and amino acids, that promote intestinal adaptation following resection. Additionally, my research includes preventing central line infections and line occlusions using 4% tetrasodium EDTA, an area for which I have received external funding. I have published more than 70 research papers that have greatly influenced management strategies for children with intestinal failure and those at risk of intestinal failure. I am active in several national organizations, serving as the executive council of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, as well as the American Academy of Pediatrics’ Section on Gastroenterology, Hepatology and Nutrition. I am passionate about leading impactful initiatives for improving nutrition and eliminating health disparities in children. Meanwhile, I’m focused on fostering professional development and collaboration among my colleagues. Outside of helping patients improve their health, you can find me enjoying a good book, hiking, running, and traveling. 


Hi, my name is Janice Taylor, MD. I am an associate professor of surgery in the division of pediatric surgery at the University of Florida College of Medicine. I earned my medical degree from The Ohio State University in 2003. I then completed my general surgery residency in 2010 at the University of Cincinnati College of Medicine. From 2005-2007, I completed a research fellowship in pediatric surgery at Cincinnati Children’s Hospital Medical Center in the laboratory of Dr. Brad Warner. Prior to joining UF, I completed a pediatric surgery fellowship at the University of Texas Medical School at Houston, where I continued as an assistant professor in pediatric surgery from 2012-2013. I focus on all aspects of pediatric surgery, with special interests in intestinal rehabilitation, neonatal surgery and minimally invasive surgery. I am the surgical director of the UF Pediatric Intestinal Rehabilitation Program. My non-clinical research focus is surgical education. I am board-certified by the American Board of Surgery in general surgery and pediatric surgery. I am also a member of the Association for Surgical Education, Association for Academic Surgery, American Pediatric Surgical Association, American College of Surgeons, and is a specialty fellow of the American Academy of Pediatrics.

Transcription:

 Melanie Cole, MS (Host): Welcome to UF Health Med Ed Cast with UF Health Shands Hospital. I'm Melanie Cole, and today we have three University of Florida College of Medicine physicians for you. Our discussion focuses on what's new in the UF Pediatric Intestinal Rehabilitation Program. Joining me in this physician roundtable today is Dr. Conrad Cole. He's a specialist in Pediatric Gastroenterology, Hepatology, and Nutrition in the Department of Pediatrics. Dr. Sam Cheng, he's an Associate Professor in Pediatric Gastroenterology, Hepatology, and Nutrition, and he's the Medical Director of the UF Pediatric Intestinal Rehabilitation Program. And Dr. Janice Taylor. She's an Associate Professor and the Pediatric Surgery Surgical Director at the UF Pediatric Intestinal Rehabilitation Program.


Doctors, thank you so much for joining us in this roundtable today. Dr. Cole, I'd like to start with you. Can you define intestinal failure for us and short bowel syndrome and give us a brief overview of some of the common conditions leading to pediatric intestinal failure?


Conrad R. Cole, MD, MPH, MSc: Thank you, Melanie, for having us. Pediatric intestinal failure has been redefined, and it really is a patient who depends on parenteral nutrition for over 60 days, and even in that 60 day period, if they get out of TPN, but they have to get back on it within two weeks, then these patients are considered to have intestinal failure.


And that's really key because, there are patients who are at risk for this particular disease who can get off TPN. And sometimes we have to put them back on TPN because they cannot grow and they cannot thrive without parenteral nutrition. So, I mean, it's really important to have that timeline when looking at patients to make a definition of intestinal failure.


And in pediatrics, the major groups of patients that are likely to develop intestinal failure;


premature infants who develop a condition called necrotizing enterocolitis and end up having significant resection, usually more than half of their intestines. These patients make the largest group of patients that develop intestinal failure.


The other patients, and actually an evolving number, is the group of patients with complex gastroschisis. Patients with gastroschisis can have not only resection, but the major issue that leads them to have intestinal failure is motility issues. So those are the two big groups of patients that can develop intestinal failure. Other patients include patients with atresia, uh, patients who have malrotation and other disorders that can lead to resection, and sometimes patients with mucosal diseases, can develop intestinal failure.


Host: Well, thank you for giving us that brief overview. And Dr. Cheng, what are some of the most significant advancements or changes introduced recently in the UF Pediatric Intestinal Rehabilitation Program? Tell us a little bit about management options for these patients.


Sam Cheng, MD, PhD: Since last year we have many changes in our UF Pediatric Intestinal Rehab program. Structurally, we have added a new dietician to the program. So we have two dieticians, and also we recently added two specialists, Dr. Cole and Dr. Gamra to the programs.


And then, not only, uh, we manage out outpatient, but also inpatient program. We enhanced also our inpatient program. We are going to include weekly rounds with our neonatologist, in addition to our regular inpatient intestinal rehab program.


So in terms of management, we have developed many new therapies to improve the outcome of the disease, which given the enhanced understanding of the GI anatomy and physiology on the remaining GI small bowel; we, uh, know, understand, uh, we added some, specific nutritions to enhance the adaptation of the remaining intestine. Recently we found the calcium carbonate supplement, for example, can enhance, the adaptation and leading to reduce the dumping, advancement of feeds, and also accelerate the weaning of the parenteral nutrition, even eliminating the need for small bowel transplants.


Janice Taylor, MD, MEd, FACS, FAAP: I would also like to add that even from the standpoint of our outpatient offerings, we've been able to expand the availability of time in clinic, for patients to be able to be seen, more regularly and more frequently. And I think this has been a great benefit with the recruitment of Dr. Cole and Dr. Gamra. We've also taken the multidisciplinary approach to these patients a step further and are also involving intensive feeding therapy options for our patients through collaboration with a UF pediatric specialty group.


Host: Dr. Taylor, sticking with you for a second, as Dr. Cheng just was explaining some of the management options, speak about some of the surgical options that happen as a result of intestinal failure in these pediatric patient population.


Janice Taylor, MD, MEd, FACS, FAAP: Sure. The abdominal surgery options for patients with intestinal failure are largely based on what the issue was that had them develop intestinal failure to begin with. So, in some situations, if they have a short length of intestine, but it dilates up enough, we're able to do some bowel lengthening surgeries to help get the patient's additional length. So there are also the gastrostomy tubes that we place for the patients, be they laparoscopically or open. Um, and then also we have become increasingly diligent in how mindful we are about the IV access for these patients and, how they're able to get their IV nutrition, their TPN, in a way that will maintain the integrity of their vascular access.


Host: Dr. Cole, why don't you speak about how patients are admitted into the program, the criteria, and why this continuum of care is so important for these patients. And while you're telling us that, I'd like you to speak about how the program, because as Dr. Taylor was just speaking about these management options, how the program addresses the quality of life for patients and their families, beyond the clinical treatment. We've heard about the multidisciplinary approach and we're going to get into that just a little bit more. But speak about admission to the program and the diagnostic criteria for it and quality of life as you're going through the treatments with these patients.


Conrad R. Cole, MD, MPH, MSc: Absolutely, the quality of life is something that's very important in the management of our patients, especially those with chronic diseases like intestinal failure. The majority of the patients that are seen at our program here, come from our hospital. I mean, that's where, and so, you know, it's important for us to start these discussions when the patients are in the neonatal intensive care.


There are a few of them that develop this from other catastrophic events that happen later on in life, but the majority start really in the NICU, here at Shands. We do have a large referral base also from within the state of Florida, and we see patients from all over.


And, the key criteria for us to see them really is the diagnosis and that they meet criteria of having intestinal failure, having been on parenteral nutrition for at least 60 days or longer. And we're also looking at opportunities for patients who might have been weaned off PN, parenteral nutrition, but they're having issues with their growth and development.


And they had in the past might have had met the criteria for intestinal failure, we would also be able to bring these patients in and they can be seen. And the usual way is that they can either reach out to a surgical team or they can reach out to us in our division of pediatric gastroenterology and we'll try to get them seen as soon as possible. Providers definitely can reach out to any one of us in the team to make sure that patients are seen appropriately.


From a quality of life area, you know, the key thing that is really important to our families is that they want to keep their children at home. They want to make sure that these children grow, that they have normal interactions as much as possible with their siblings.


And so what we try to do is look at ways to make sure that we keep our patients out of the hospital. And so, that's how we've developed a way of monitoring patients on long term parenteral nutrition at home, making sure that we assess them nutritionally with frequent clinic visits, so that we can try to be proactive in how we assess them nutritionally. We don't want to wait until they run into trouble.


We've also developed ways to prevent or try to work with families in terms of preventing home acquired central line associated bloodstream infections, by using specific, things in terms of locks. And this lock therapy has really been helpful to decrease our rate of home acquired central line associated bloodstream infection.


So these are the key things that if we can keep our patients home, interact directly with families, patients that, at least, know, when you look at other studies that have been done, that definitely increases the quality of life, not only of the patient, but since these are children, it's really the quality of life of their immediate family, their primary caregivers, which is usually the mother, and also ther other siblings.


Sam Cheng, MD, PhD: I would also add short bowel syndrome is not only a GI disease; involving multiple systems. It's a systemic disease such as bone health. Patient with short bowel syndrome, often have some, um, metabolic bone disease.


So we also take care not only the GI but also some other complications associated with short bowel syndromes including bone health, kidney stone, gallstone, and then mental health.


Host: That's a great point, Dr. Cheng, and it leads me very well into your next question, which is to expand on that multidisciplinary team. Because as you're saying, bone health. There's so many other aspects to short bowel syndrome and to what the quality of life for these children and their families, as Dr. Cole said, really is.


So speak about your team. I'd like you to just tell us a little bit about all the people that are involved, and as we're trying to think about keeping these children in their homes, where they will thrive and be the most happy with their families. Tell us about how the team interacts with the families, how that all works together.


Sam Cheng, MD, PhD: Short bowel syndrome is a rare disease, but it's a very complicated condition. Like I just said, short bowel syndrome involving multiple systems. So in order to manage this patient better, so this is approved and the multidisciplinary care is necessary, which include not only our GI doctor.


So we have now three GI doctors focused on this area and also involving nutrition. We have two nutritionists and then also surgical team, like involved. And Dr. Taylor is the surgical director. So this is a must. In addition, we also involved multiple, almost every specialty in the care of this patient, including hematology, because the patients with the central line tends developing a clot, you know, clot formation, so we need their help.


And then we need an I. D. doctor, because of the risk of developing, uh, we call a CLABSI, central-line associated, bloodstream infection. So they are also play a crucial role in the care of this patient. And then also like I said, the neonatologist, of course, because the condition generally initiated in the neonatal period because of the surgery and then cared by the neonatologist and also involving the PICU teams, specialists, whenever needed. Like when patients in the septic shock, so we need their help as well. So they also play a role here. And then the nephrologist, like I said, taking care of our kidney issues and then sometimes also dehydration because of kidney loss of water, and then an endocrine doctor who, we have a recent interaction with them and they play a crucial role in help us maintaining the bone health of those patients. And then we also have a dedicated team, the home nurse, the pharmacy, the TPN pharmacy. And they play also key role in help patient in home care of most patients.


And then we have a full nurse, office help, taking care of their TPN and then other nutritionist conditions. So it's a large team, so including multiple disciplinary, to care of this special patient.


Host: Dr. Taylor, how has the program incorporated cutting edge technologies, the medical home, all for the quality of life for these patients?


Janice Taylor, MD, MEd, FACS, FAAP: I think this is where telemedicine has really been a huge help in maintaining contact with patients who might not be so close. They don't have to come such a distance for a follow up if something can be appropriately managed, uh, without them being in person.


I think one advantage to our program being a very close knit group of surgeons and gastroenterologists and infectious disease doctors and, nutritionists is that we're also very well connected, within the state region and the country. So, we have a lot of the numbers of the pediatricians and the local surgeons and other local specialists practically on speed dial.


So if there's something that comes up with a child that they happen to be closer to home and potentially hospitalized closer to home, we can work with their physician team remotely to help maintain the care that they need and transfer them really when they truly need to be.


And I think that's been building those relationships over the past several years has been a really great feature of our program that I actually wasn't really thinking about when it started.


Host: Thank you so much. And Dr. Cheng, goals for the program over the next five years, what are your visions for this program and how will this care model that you have all so eloquently described here today, improve the way patients receive their care and improve their patient journey and outcomes and change the way that they're receiving care for related conditions that are so complex?


Sam Cheng, MD, PhD: This is a very rare disease and very complex disease. So we put a lot of effort through research and then innovation to first, increase understanding of the physiology of this condition and then, introducing new therapies and to help, on the change, improved outcome of this disease.


The multiple QI project has been going on recently, in this group, which includes example. I can give you some examples we did a small QI and then we found the CLABSI rate, the bloodstream infection rate is related to the missing clinic, for example. Patient missing clinic, and then there's a higher rate in the risk in developing CLABSI.


So we like to understand what's the factors there and then what's the contributors. And we also are trying to identify the other factors, not the link to the increased rate of CLABSI. And then also we are standardizing the use and the selection of antibiotics. For example, to prevent and treat SIBO, the small bowel bacteria overgrowth.


Right now, the use of antibiotics is not standardized, and then, so we are also working on that area to hopefully standardize a protocol. And then also try to understand and treat the high incident rate of IBD in this group of patients. So we like to understand through, this is something we are doing right now through a collaboration with the Department of Genetics to help understand any genes, specific genes involved in the development of this inflammatory bowel disease in this group of patients. This is just example, And then also we are trying to understand the nutrition. Many of these patient have some deficiency in micronutrients. So we are also doing studies to understand, and hopefully we can improve their intestinal adaptations through, uh, better nutrition.


Conrad R. Cole, MD, MPH, MSc: To add to that, there are quite a number of new ongoing technology that's coming out that really would make an impact on this population, which we are either part of the development, or we would at least bring to the forefront as soon as these are approved. I mean, as Dr. Cheng brought up the issue about bloodstream infections. There are existing solutions that we use as locks that are doing well, but there are also newer solutions that have been approved in Europe and in Canada that have been looked at and potentially we are going to be centers for some of these studies.


They're also modifying agents that have been approved in the U. S. and these agents are now short term agents in terms of how they're used, but there are also studies looking at longer term and modifiable agents like GLP 2, in terms of short acting and long acting agents. And we are in the lead with some of the work that's been done by Dr. Cheng, in terms of, rehydration for these patients with the use of calcium carbonate and other issues. So, I mean, the time is right. I think we're at the precipice of great things with what we're doing here in this program, thanks to the teamwork, that has been set up here.


Host: What a comprehensive program. Thank you all so much for joining us today and sharing your incredible expertise for other providers. And to learn more about this and other health care topics at UF Health Shands Hospital, please visit Innovation.UFhealth.org and to listen to more podcasts from our experts, you can always visit UFhealth.org/medmatters.


That concludes today's episode of UF Health Med Ed Cast with UF Health Shands Hospital. I'm Melanie Cole. Thanks so much for joining us today.