Pediatric Inflammatory Bowel Disease Program at the Cleveland Clinic: Helping IBD Pediatric Patients Transition to Adult-Centered Care

Podcast Transcript

Dr. Scott Steele: Butts and Guts, a Cleveland Clinic Podcast, exploring your digestive and surgical health from end to end.

Dr. Scott Steele: Hi everyone, and welcome back to another episode of Butts and Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland Clinic in be beautiful Cleveland, Ohio. And I'm very pleased today to have a dual threat if you will. I'm going to talk about Cleveland Clinic's Pediatric Inflammatory Bowel Disease Program. So, first, Jacob Kurowski is a pediatric gastroenterologist at Cleveland Clinic Children's, and Jessica Philpott, an adult care gastroenterologist at Cleveland Clinic. And these two together work in a transition clinic to kind of ease children from pediatric to adult-centered care, beginning around 18 years old and into their early twenties depending on the individual. So, thank you both for joining us, and welcome to Butts and Guts.

Dr. Jessica Philpott: So happy to be here.

Dr. Jacob Kurowski: Thank you so much for having us.

Dr. Scott Steele: First, we always like to start out with each of our guests to give us a little bit about your background. Where are you from? Where did you train, and how did it come that you're here at the Cleveland Clinic? So, Dr. Philpott, why don't you start us off?

Dr. Jessica Philpott: Well, hi. So, yeah, I've been a gastroenterologist here at the clinic now for 10 years, and I trained at Ohio State and then in Oklahoma and Texas. I think my interest in pediatric GI, because obviously I'm an adult gastroenterologist, stems from the family, as my husband is actually a pediatric gastroenterologist. I think that's where I first became interested in transitional care for IBD patients. So, I think it's a very important area because, and we'll talk a lot more about this, but patients that are diagnosed as children eventually will grow up to be adults, and they have to come into adult care. So, this is one of my particular focus, foci, I guess I would say, clinically.

Dr. Scott Steele: Jacob, how about yourself?

Dr. Jacob Kurowski: So, I am a Cleveland native. I also did my medical school at Ohio State, and then I did residency and fellowship both at Northwestern University in Chicago. I quickly became interested in pediatric IBD upon starting GI fellowship. Then once I finished, I was looking to move back to Cleveland for family purposes. The Cleveland Clinic was a great opportunity to expand kind of my IBD clinical care and practice, along with a lot of research opportunities that had been afforded to me. So, it was a great opportunity in the city that I already had wanted to be in. There was a great opportunity for me here. Then quickly after joining, Dr. Philpott reached out to me, which was about six or seven years ago now, about starting to collaborate on transitional care. We started to write some literature together, and published several papers, and then formally put together a transition clinic.

Dr. Scott Steele: Well, we are so glad to have you both here, and as a fellow Big 10 member, a lot of Big 10 blood running through here. So, Jessica we'll start off with you. Can you give our listeners, we've had some people talk about IBD but our listeners may not have listened to all of them, so can you give a little refresh, a little bit of a 10,000-foot view level of what is inflammatory bowel disease?

Dr. Jessica Philpott: Yeah, certainly. So, inflammatory bowel disease actually encompasses a number of disorders all under one umbrella. But basically, they’re autoimmune conditions of the intestines, and the two main forms that we deal with are Crohn's and ulcerative colitis. In both of these situations, dysfunctional immune reaction with the flora of the intestines results in damaging inflammation in the intestinal lining. There's a wide range of symptoms that may result from these disorders, but largely patients will have diarrhea, may have abdominal pain, weight loss, anemia. Each year, we have a better idea of how to treat them. But the mainstay of our medical treatment are immunosuppressive therapies that help us not take away the immune system, but shift its core, so it's not as destructive.

Dr. Scott Steele: And Jacob, can you give us a little bit of an overview on Cleveland Clinic Children's Inflammatory Bowel Disease Program?

Dr. Jacob Kurowski: Absolutely. So, the Cleveland Clinic Children's has been taking care of pediatric IBD for decades. Over the last several years, we have implemented a formal program really to streamline and formalize the process for patients when they come here to making sure that they really are receiving multidisciplinary, high-end care, including not just thinking about the physician and the patient, but also care coordinators, nutritionists, or dietitians, our pediatric and adult colorectal surgeons, social work, psychology, all kind of under one program, working together. So, bringing all these different aspects together allows us to address all of the different needs a child may need, in addition to just their medical care, including their mental health, nutrition, and the impact on the entire family that occurs when a child is diagnosed with inflammatory bowel disease.

Dr. Scott Steele: Jessica, we know there's kind of different peaks in terms of onset within IBD itself, but how common are inflammatory bowel disease issues in children, or maybe even into this transition state?

Dr. Jessica Philpott: I think that's a moving target. There's actually recently published an article that we continued to note an increase in incidence in children. About 25% of patients who develop IBD develop that in childhood or late adolescents. So, at least a quarter of our patients will be diagnosed at an early age.

Dr. Scott Steele: Jacob, truth or myth? If a person is diagnosed with IBD, it's likely this diagnosis occurs when they're still a child.

Dr. Jacob Kurowski: So, I think as Dr. Philpott pointed out, that about a quarter of patients are diagnosed before they're 20 years of age. I think if you look at the overall burden in inflammatory bowel disease, a lot of them may start even with symptoms in childhood, before they're actually diagnosed in their twenties in what we might not consider pediatric onset disease, but it's still very young. If you look at any of the kind of risk criteria for what is high-risk disease, anybody diagnosed before even 30 years of age is going to be considered a high-risk modifier for having a long-term disease burden for the disease. So, a little bit of, a little bit of both. I would say, not everybody is diagnosed in childhood, but it definitely tends to be a larger burden when it is diagnosed in childhood.

Dr. Scott Steele: Yeah. You touched a little bit about this one. So, Jessica, truth or myth? IBD symptoms are more aggressive in children than in adults.

Dr. Jessica Philpott: So, unfortunately it is true that patients that are diagnosed at an earlier age are higher risk for more destructive disease. So, when I'm assessing a patient as an adult, there's a number of factors I assess in order to really assess what their prognosis is. And being diagnosed at a young age, certainly can predict more aggressive disease. That means I need to be more aggressive in terms of making sure I manage it well. I think the second aspect to that is that when individuals develop inflammatory bowel disease at an age when they should be growing and achieving their full height, it can have a permanent impact on them. That's why I'm so glad I have heroes and colleagues such as Dr. Kurowski to really identify this disease early and treat it to avoid those side effects of having the disease.

Dr. Scott Steele: So, to the both of you know, it's very nerve-wracking to go to the doctor's office, especially if you're dealing with children in some cases. So, what can a parent and their child expect during their initial appointment when they come to visit either one of you or another member of your team here within our IBD program?

Dr. Jacob Kurowski: Yeah, so we expect a full, comprehensive evaluation, whether or not they've been diagnosed yet. Certainly, there are a large number which we have a high suspicion that they are going to be a diagnosis, and we start to prepare them leading into an endoscopy. The disease requires quite a bit of care outside of just the initial visit and the follow-up visits. So, what we want to kind of do is welcome them into the program and understand that they are not alone, and that there is a huge team behind what we do to help take care of them, and that we're going to take it one step at a time, one day at a time, and address all their questions and all their needs, and look at each child individually, and address what we can, point by point for that child. There are certainly different variations within the disease and finer points in which there's not a one-size-fits-all plan for each patient.

There are nuances as both a science and an art form, as we do in medicine. So, it is a lifelong diagnosis, and while it can be scary, we want to provide a lot of reassurance. I want to let people know that we want their child to live a long, healthy, happy life, and that I want them to have whatever dreams and plans they had for their life, and that the parents have for the child, that we're going to try not to disrupt that. We're going to try to maintain all of that, and that as we move through the process, a gastroenterologist and the IBD team is going to be involved throughout the course, but we're going to support them every step of the way.

Dr. Jessica Philpott: And to add that, when I will first come in contact with them often is in our Joint Transition Clinic, and that's a different position. So, Jake's talking about when they're first coming in to be diagnosed. But another critical part of care of individuals that develop inflammatory bowel disease as children is that at some point they will transfer their care to adult gastroenterology. That is a little bit different setup because we're addressing different needs. What the transition clinic that Dr. Kurowski and I have developed is designed to try and help facilitate that process for patients that might have challenges to transferring to adult medicine. So, for our Transition Clinic, what will happen is it's a joint visit, and so both Dr. Kurowski and I will be there at the visit. The process of the visit will kind of review the entire history of what they've been through, how they're doing currently, and then come up with a plan to help transition them to the adult care world.

So, we'll assess if they have any psychological needs, if they'll need some assistance with that. So, we have adult psychologists that can assist with the needs of, for anxiety, depression, things of that nature, if they'll need a nutrition consult of what procedures they'll need. We try and educate them about the differences between adult medicine and pediatrics. One of the important parts is to educate the patient and their family members as to why it is important eventually to transfer to adult care because we provide care that's necessary to adults, and we specialize in that area.

Dr. Scott Steele: So, understanding that we all play various roles in terms of every patient's care, is this something that they need to check in with their specialists only when there's a flare, or is this more like a continuity?

Dr. Jacob Kurowski: Yeah, so absolutely a continuity of care. So, after diagnosis, we'll see the patients several times in the first one to two months, sometimes even more frequently, depending on what complications or issues may arise. Then the goal is to have somebody in remission as quickly as possible. But certainly I want to see a patient at least every three to four months, at a minimum of every six months. The only advantage to, one of the few advantages we've seen from the pandemic, is it really has accelerated telehealth. And so a lot of times I'm touching base with patients even a little bit more often when we can do virtual visits mixed in with in-person visits. If patients are coming for infusions, then certainly there's an opportunity to see them there as well. But I want to be involved every step of the way for the duration of their disease while they're under our care in Children's.

Now, we certainly want the primary care doctors involved. I am not taking the place of anybody's primary care physician. So, your regular coughs, colds, bump, bruises, everything like that, you would still go, encourage people to keep contact with their pediatrician or family practice physician, and certainly, we're sending them all of our notes, and communicating as regularly as possible. But we want to keep a close eye on patients for various reasons, as the disease has impact on not only just their medical needs, but also their mental health and other areas, which they arise at different time points in somebody's life.

So, while a patient might be diagnosed at eight, what they perceive at eight is going to be very different than what they perceive at 12 and 14 and 15. As they evolve psychologically, those are other neat reasons that we want to touch base with them on a frequent basis, in addition to the medical care that they need, as they're growing. We want to make sure that their growth is as expected, especially if they were behind to begin with because of the disease. So, routine care is going to be very much important for them.

Dr. Scott Steele: Jessica, I want to dig in a little deeper about something you briefly brought up, and that's kind of that transition for teenagers in the program. So, what does that transition entail, and are there some differences in terms of how the treatment goes or the care pathways that you use for that kind of that teenage into early adulthood?

Dr. Jessica Philpott: Absolutely, and I think there's two elements to this change in progression of care. I think what's actually most important is that as people age, most of them will assume independence, and they'll begin to manage their care. So, most of the time when one's diagnosed as a child, their parents are going to be driving their care. They're going to be making decisions, doing most of the interactions with the providers. As they come into adult medicine, at that point, they're also becoming adults, and more and more, our expectation is going to be that they'll actually be managing their care. Now they can still certainly have the assistance and the involvement of any family members that they want. But really, the assumption of healthcare independence is a gradual process. It's not a cutoff. So, patients need to assume the tools that they need in order to be independent, that means understanding their disease, understanding themselves, their medications, and that truly is a gradual process, and that starts really in early to late teens in pediatric clinics. So, they start to educate them with each visit, and assess how ready they are to assume healthcare independence. So, that's a gradual process. 

The actual transfer of care going from pediatrics to adult usually is a discrete event. So, again, either in our case, they'll often meet with us in a transition clinic. Then the next visit they'll make will be with the adult provider in the adult clinic, and that is different for different patients. So, for some patients, they're already very independent. They're already working. That may be again, a very easy and quick change. For some people, if they have very aggressive disease or they've had trouble managing some of those things, again, that may be more of a gradual process, where they need more assistance in developing those skills to be the main driver of their care when they come into adult medicine.

Dr. Jacob Kurowski: Just to piggyback on that, we have implemented an annual wellness visit starting at 12 years old, for all of our patients in which they'll come once a year. So, one of their regular visits will be a little bit longer visit in which they'll meet, not only with their physician, but with a care coordinator, who's going to go over transition of responsibility, that it's age-appropriate. So, we have different benchmarks that have been developed through our National Pediatric GI Association, along with the Crohn's and Colitis Foundation, on what are things you should be doing at different ages to try to slowly ease that transition of responsibility in a timely fashion? So, far before a patient turns 18, even starting at 12 years old, we want to make sure can they do basic things like starting to learn their medications? Can they even just take their temperature?

How would they get ahold of a physician, if for some reason, Mom or Dad were not available? Just even putting a physician's phone number in their phone. Every kid over 12 or 13 years old has an iPhone, or has some type of cellular device, and often our phone number is not in their phone. They have everybody else in there, but we want to make sure that we're doing those little things, so that they understand that they are going to be responsible for their own care, starting at an early age.

Dr. Scott Steele: What's on the horizon as far as research into better managing IBD for both children and adults?

Dr. Jessica Philpott: So, I think eventually what's aspirational is someday we would like to be able to prevent or to cure inflammatory bowel disease. So, that's something that we'll always continue to work for, but that probably will take quite some time. I think what's more short-term, and I think we can expect in the next decade will, be more personalized medicine. So, each year we have a number of new medications available to treat these disorders, but in order to identify which person will do best with which medication, is something that we're developing better tools with, so we can identify the optimal therapy for each person.

Dr. Jacob Kurowski: Yes, I think personalizing the care is really where the field is going to both cure and prevent the disease through a number of prognostic biomarkers, and through certainly different serum, intestinal and stool biomarkers that will kind of help us really tailor therapy to each individual. The new therapies that are coming out are for the most part, very targeted. Obviously, we'd like to get away from anything that's infusion-based and so that things can be delivered at home a lot easier than having to come to an infusion center, as that certainly takes a lot of time up for patients and places a burden on them for school and for work. So, certainly there is a lot more on the horizon for care for both pediatric and adult IBD, along with our very early-onset IBD patients. We're finding more and more genes or monogenic defects related to early-onset IBD that can also be targeted, as well. So, it's certainly a lot of hope.

Dr. Scott Steele: That's fantastic and exciting stuff. We always like to end with getting to know our guests a little bit better, so we'll go back and forth. So, Jessica, what's your favorite food?

Dr. Jessica Philpott: That's a good question. I have to say pizza.

Dr. Scott Steele: Great. Jacob?

Dr. Jacob Kurowski: I'm going to go with a Texas-style brisket.

Dr. Scott Steele: Very nice. So, Jacob we'll lead with you now. What's your favorite sport?

Dr. Jacob Kurowski: Unfortunately, it's football. My wife is a neurologist and doesn't want my children playing, but for better or worse, I'm a Browns fan, and football is still number one.

Dr. Scott Steele: Jessica?

Dr. Jessica Philpott: Well, certainly for participation, I prefer to ski. So, if you can't find me, I'm on the mountains.

Dr. Scott Steele: Yep, absolutely. So, Jessica now to you, so tell us about maybe a favorite place that you've visited or traveled to.

Dr. Jessica Philpott: So, again, every chance I get I'm going to head to the mountains. I grew up in Colorado, so the Rocky Mountains are closest to my heart, but there's always something new to do there and see.

Dr. Scott Steele: Jake?

Dr. Jacob Kurowski:I love the mountains as well, I would say, and I second the skiing aspect, although I'm still a bit of a beginner. But I'll say any national park in the United States would be a favorite place.

Dr. Scott Steele: Then finally, to the both of you, you've been around the world, probably and some various places across the US. What do you like about here in Northeast Ohio?

Dr. Jessica Philpott: I have to say, I love the people in Northeast, Ohio. They're a mixture of true friendliness and yet common sense, and I like being the middle. Like, we're equidistant basically between Chicago and New York, but our traffic isn't nearly as bad.

Dr. Jacob Kurowski: I second, the lack of traffic. It's fantastic, having spent six years in Chicago where it takes an hour and a half to go 10 to 15 miles anywhere. Cleveland offers a little bit of everything. I love the food scene here and the theater, so I would say it offers a lot from a cultural standpoint, in addition to great medical care.

Dr. Scott Steele: That's fantastic. I agree with you both. So just very quickly a final take home-message for our listeners, regarding this transition time.

Dr. Jacob Kurowski: I want to just instill for everyone that they're this is certainly a vital part of somebody's life, and it's a vital point that a young adult's life moving from the pediatric care to adult care. But it makes it a lot easier when I have such great people to work with, like Dr. Philpott on the adult side, is that care at Cleveland Clinic is seamless when we're moving from one area to the next, and so a lot of reassurance and a lot of hope.

Dr. Jessica Philpott: I agree. I think it's very hopeful, and I think every change that people go through is frightening at first to some extent, but it offers new opportunities. So, I think it opens vistas of things that one wasn't expecting, and I think it's also important whenever you encounter change to understand that even this, like a transfer of care from pediatrics to adult is going to look different for different people. So, if one is going through that, you need to give yourself a little bit of time. Make sure you know what you want out of the situation, and just understand that you can take the time you need, and you need to find the situation that you need. So, listen to your gut. Ask the questions you need to be asked, and that'll help you get where you need to go.

Dr. Scott Steele: That's fantastic. So, to learn more about Cleveland Clinic's Pediatric Inflammatory Bowel Disease Program, please visit clevelandclinicchildrens.org/IBD. That's clevelandclinicchildrens.org/IBD. You can also call us at (216) 444-5437. That's (216) 444-5437. Again, you've heard me say it a million times, finally, please remember it's important for you and your family to continue to receive medical care, get regular checkups and screenings, and rest assured here at the Cleveland Clinic, we're taking all the necessary precautions to sterilize our facilities, and protect our patients and caregivers. Thank you both for joining us here on Butts and Guts.

Dr. Jacob Kurowski: Thank you.

Dr. Jessica Philpott: Thank you.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.