Navigating IBD in Children and Teens with Dr. Sandra Kim

IBD Center | UPMC Children’s Hospital of Pittsburgh

IBD GROW | UPMC Children’s

ImproveCareNow.org

Crohn’s and Colitis Foundation

The PROKIIDS Network | Crohn’s and Colitis Foundation

Pediatric RISK Stratification Study | Crohn’s and Colitis Foundation

Sandra Kim, MD Twitter

Lexie the Mini Goldendoodle Instagram

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Voiceover: This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. Welcome to "That's Pediatrics", where we sit down with physicians, scientists, and experts to discuss the latest discoveries and innovations in pediatric healthcare.

Dr. Allison Williams: Hi, I'm Ally Williams, a Pediatric Hospitalist here at UPMC Children's Hospital of Pittsburgh.

Dr. Sameer Agnihotri: I'm Sameer Agnihotri, an Assistant Professor in the Department of Neurological Surgery.

Dr. Williams: And this is That's Pediatrics, a podcast here at UPMC Children's Hospital of Pittsburgh, highlighting some of our excellent clinicians, educators and researchers, including Dr. Sandy Kim who's here with us today. She is one of the many fabulous gastroenterologists that we have here at UPMC Children's and she is also the Director of the Inflammatory Bowel Disease Center. Thank you so much for being here. So we always like to start the podcast with kind of a fun question just to get into a nice, easy conversation here, but I have heard through the grapevine that you have a dog and that you love your dog.

Dr. Sandra “Sandy” Kim: Okay. So I'm just going to say that love is just probably a mild word to describe.

Dr. Williams: Sure.

Dr. Kim: So starting back, I used to be the most canine-phobic, neat freak person you'll ever meet so I never understood the love that people have for their dogs. I will tell you, I saw the movie, again, the power of Disney, Secret Life of Pets and I thought, "If I had a pet, what would it be?" And I thought it'll probably be some princessy dog. So anyway, I, long story short, ended up getting a dog right as I moved here to Pittsburgh five and a half years ago. And yes, I am now going to shamelessly tell you that I am the most devoted, fanatic canine mom you will ever meet. So it's Lexie, she's a mini Goldendoodle and she runs my life, end of story.

Dr. Williams: And I mean, you've already been here in Pittsburgh for five and a half years, which is amazing. But what types of things in Pittsburgh do you like to do with Lexie?

Dr. Kim: Well, I mean, we live in Lawrenceville. One of the things that I wanted to do when I moved here, even pre-Lexie, I wanted to live in Lawrenceville. Besides the fact that it's a vibrant area, I love the food scene, I'm a foodie, great shops and galleries. I really wanted to know the neighborhood that I would have the privilege of serving. And so it's been really cool because I've gotten to know the neighborhood and now that I have a dog, so you guys won't believe this, I may seem like I'm extroverted, but I'm actually an extroverted introvert in some way. So by having a dog, I've actually gotten to know all the people that live here. So Lexie and I will walk miles when the weather's nice, we'll explore the neighborhood and I've learned that Lawrenceville especially is quite dog-friendly.

Dr. Williams: Yeah, I noticed that.

Dr. Kim: Yeah. Oh, absolutely. A lot of the outdoor patios, there is also the only dog ice cream parlor in Pennsylvania right down the street. And in fact, they held an ice cream social to help Lexie raise money for the Crohn's & Colitis Foundation. So she was actually top dog, she raised $2,100, by the way, yay, Lexie. And so it's just really cool.

Dr. Agnihotri: That's amazing.

Dr. Kim: Yeah.

Dr. Agnihotri: So you've been here for five and a half years?

Dr. Kim: Almost six years, I'm going to reach my six-year anniversary on November the fourth.

Dr. Agnihotri: That's amazing.

Dr. Williams: Wow.

Dr. Kim: Yes.

Dr. Agnihotri: So can you tell us what brought you to Pittsburgh, a little bit about your training and your passion for IBD research and-

Dr. Kim: Sure. So absolutely, so I am a born and bred Midwestern, actually born in Pittsburgh, although I grew up in Columbus, Ohio. But I went to the University of Michigan for undergrad med school, I was in the Inteflex or Integrated Premed-Med program there. So in terms of how I started focusing on IBD, I think even stepping back, in medical school, I knew that I was going to either be a pathologist, but that involved not actually seeing live patients or wanted to do GI. So I actually picked GI before I picked pediatrics and then I just thought the melding of my love of caring for kids, my strong academic and scientific interest in GI, it worked out.

So at that point, during residency in the early part of my GI fellowship down in Houston, Texas, at Texas Children's, Baylor College of Medicine, I really debated between hepatology and IBD. And I'll tell you the game changer for me was the first year my fellowship.

So I had the privilege of caring for a young woman who unfortunately ended up coming to the Emergency Room quite sick, ended up having severe, stricturing Crohn's disease, had to be in the ICU because of just complications of disease, not from treatment, but because of the timing of getting diagnosed.

And so this was a young woman that I kept a friendship with, she actually gave me a scarf because she knew I love scarves and asked me to just remember what it was like to be a young adult who didn't feel heard when she said, "I was not doing well." So that is that point in my career as a first year fellow that I had a mission statement that I made for myself and that hasn't changed in the past few decades. So it's really just to be the best possible advocate for kids and teens living through IBD and that's driven me in facets of my career, research, quality improvement, but most importantly advocacy in clinical care.

Dr. Agnihotri: Wow.

Dr. Williams: Inflammatory bowel disease seems like one of those diseases in pediatrics that's so challenging in this setting that most of the time this occurs in the adolescent phase and that's right when you at least feel like you're getting some sort of semblance of what your life should be like and look like. And I imagine when you get this diagnosis, it throws your life into a bit of chaos to start with?

Dr. Kim: Oh, absolutely. I think when we think about inflammatory bowel diseases, so thinking of Crohn's disease and ulcerative colitis, I think there are a couple things. So number one, it's a chronic illness. And so with all the advances we've made — and we have — to still sit down with a family and say, "This is a chronic disease that doesn't just infect your GI tract but can affect so many things outside of the GI tract. And that for all the advances we have in diagnostics and treatments, I still can't tell you I have a cure for your child. This is going to be lifelong." So I think being an adolescent when you're grappling with so many things, I can't imagine what it's like to then have one more thing on your plate. But the flip side is also talking to parents who have an infant or a toddler and looking at sometimes the fear and the anxiety and sometimes the guilt in their eyes, right?

Because they think, "What did I do? What could I've done differently?" And so I think whether it's a teenager who is sitting there trying to just live their lives, it's a parent or it's a child, I think one of the things we first say is, "You know what? There is not to be any guilt. You can cry, let it out of your system, it's nothing you did wrong. You did everything right by coming here to our hospital and giving us the privilege of caring for your child and allowing us to partner. And that's how we have to move forward." So I think that's just looking at the whole family. In terms of being a teenager, I think there's so many things, there's the medical piece, but there's all the other changes that we're asking. We talk about treatments and clinic visits and procedures, changing your diet.

And so I think the first thing I always like to do when I start a clinic visit is not ask about, are you having abdominal pain? How many bowel movements do you have? What do they look like? Because I think that's what people equate with coming to a GI office. I like to ask them, "So what did you do this summer? How is school going? What's your GPA?" And then they cringe a little bit and I say, "Are you doing your activities? No, I didn't talk to your parents about if you were doing your homework." Because to me, when we talk about what parameters a child or teen or parent has, it's not about how many bowel movements or how much abdominal pain are you having, it's are you doing the activities that every teen and child should do? Doing well in school, doing your activities.

Because really at the end of the day, I always like to tell folks that if you're not doing well, it's not a grade on you, it's a grade on me and it's a grade on your healthcare team. So we need to know what it's going to take for you to do those daily activities. Just because you happen to have Crohn's disease or ulcerative colitis, it doesn't mean you get out of going to school, it doesn't mean that you can't be successful academically, athletically, in the arts, whatever you want to do. And so we have an obligation and I have an obligation as a physician to make sure that my kids and my teens and young adults who come here do all the things that they want to do. And if they don't then we need to figure out why they're not.

Dr. Williams: And we're so fortunate here at the Children's Hospital of Pittsburgh to have the Inflammatory Bowel Disease Center, which you're the director of. I imagine that this is also a great comprehensive care for kids with this illness. Can you tell us a little bit about the center that you're the director of?

Dr. Kim: Oh, absolutely. So first of all, I'm just a small piece of things. So I happen to direct the IBD program from a medical standpoint and I work closely with Dr. Kevin Mullen who's our surgical director, who's also a nationally recognized expert in pediatric surgery with a focus on IBD care. And in fact, a lot of folks come to see us because they actually want to see him and his colleagues and get that surgical expertise.

But again, when I say I'm a small piece, it's because I work with other great folks. So there are two other IBD specific GI physicians within our group. Dr. Leah Siebold, who helps as the assistant director of the program, Dr. Whitney Sunseri, who is really an educational guru in the area and advocate and is also an excellent physician. And then I say that the real driver of the group is actually Whitney Gray, who is a pediatric nurse practitioner.

But she and I started around the same time. I always say that she's probably my best mentee and one of the best hires I've ever made in my career because she oversees a lot. She ensures that all of our patients that are newly diagnosed have a very comprehensive new patient teaching, which many people don't do across the country. So in fact, Whitney has established herself as being an expert in that. And we do annual visits for our young adults so that they have an annual visit where they can discuss all the things that are important as a young adult who goes through that transitioning process so that we can then successfully transfer to our adult colleagues. We are also involved in ImproveCareNow. So it's a pediatric, IBD quality improvement collaborative in North America, there are 107 centers. We have a very talented and expert IBD quality improvement analyst, Roger Odom, who helps oversee all the quality improvement that we do.

Because I always say, we are first and foremost clinicians, so we have to provide great care, we have to educate so that we equip our families with those tools. We have to do quality improvement (QI) and do it effectively. Because I think quality improvement is that piece that allows us to effectively give standardized care to our patients. And if we're not doing that effectively, then we need to look as a QI team and see what we can do to improve that. So we've got that QI piece. So we've got clinical care, we've got education, we have the QI piece and then the other part that we're doing, that we're going to fully bring in the patients. We just recently got approval for a parent mentoring program.

Dr. Williams: That's amazing.

Dr. Kim: Yeah, so we're excited. So Whitney Gray again is helping oversee that piece. So we're hoping to have that parent mentoring program launched within the next few months. And so the purpose of a parent mentoring program is having trained parents who are really the ultimate experts in the care of kids living with IBD because the parents have gone through this. And so I'm really fortunate at my previous institution I had actually published on the impact of parent mentoring so I'm a firm believer in that. And so we're able to actually get some expert parent mentors because some of them are actually families that worked with me at my former institution. They're here now and they're willing to be up and running and to start that program.

So I think that's just a small piece. And then I can't forget the research we do. So both of our fellows who've actually extensively published both previous fellows, like Hilary Michel who was a former fellow here and Kevin Chaza as well as current fellows who are also doing research in the area. And so we've got that research piece with fellows and mentoring. We have the fact that we are involved in all the major pediatric IBD research networks on a national level and then we really try to keep up with clinical trials. So we have, again, access to our families who need those medications that are not a part of routines therapies available.

Dr. Agnihotri: Yeah, that's exciting. I mean, you touched upon the research and so you're not only nationally recognized, you're also internationally recognized. Can you highlight some of your studies or what you guys are excited about in IBD in terms of treatments and what's coming down the pipeline?

Dr. Kim: Sure, absolutely. So I think when we look at research, I always say that the traditional model was the individual investigator driven research. And I think that's important. So I want to highlight someone like Dr. Kevin Mullen who is NIH funded, who has also received funds through the Crohn's & Colitis Foundation because of his innovative bench based research, looking more at different reasons that you have the actual pathogenesis of IBD. So he's actually working, looking at, for instance, human organoids, looking at tissue to then develop models that you can actually study that pathogenesis piece. So we have folks like Kevin Mullen, Mike Morowitz, who also works with looking at the microbiome and looking at the basic early development. At the same time, the reason that these pediatric IBD collaboratives are so important is because I think when you have chronic illnesses like IBD, when you have relatively small numbers at any individual center, I mean, we care for over 1,000 children living with IBD, but really I think the team science is powerful.

So the pediatric research networks that are funded through the Crohn's & Colitis Foundation, the NIH, are huge where we collaborate not only to do retrospective studies, but more importantly to do prospective studies. So a couple of studies that we've been involved in include the Pediatric Research Network or PROKIIDS funded through the Crohn's & Colitis Foundation. And one of the first major studies was the RISK study. And we were an important part of this, where you looked at kids prospectively at the time of diagnosis. And it's one of those things that we always say, how can we predict what the outcomes are going to be for our kids? And so I remember being at my previous institution, which was also a part of this group of leaders in research saying to families, "I wish I could take that crystal ball and say to you that if your child is diagnosed with Crohn's disease, that this is the outcome that I predict."

But by having studies like RISK with major centers like UPMC Children's being involved, we could prospectively get biopsy samples, blood and then clinical data, follow these kids through. So now we have several studies that look at this initial risk cohort that was started over a decade ago, looking at the data to say these are the characteristics that may predict outcomes in patients who have Crohn's disease. So by having this data you can then look at other predictive models. So I think that's one way we look at team science.

So we've got individuals who are doing research, we have our involvement in major IBD research networks, and then the other piece is new medications or therapeutics that we know have been found to be effective in adult patients with IBD. But with the mandates from the FDA and really this push to get medications quicker to children, we are at least trying to be involved in some of these studies to see if these medications can also be effective in children as well. So I think it's really that multiple pronged approach.

Dr. Agnihotri: That's fantastic.

Dr. Williams: I feel like the breadth of the comprehensiveness is almost as long as the GI tract. Not to make a bad pun, but it feels like you just cover everything from literally start to finish, which is really important when you're saying that you're a nationally renowned inflammatory bowel disease center and we're so lucky to have that here.

Dr. Kim: We are. I think when people think about care, they think about that individual physician that they see or that nurse practitioner or if they are unfortunately hospitalized, they see a team that rounds. And I think that's one piece, but again, when we talk about it, it's not just about the care, it's a given that we need to deliver the optimal care. It's also about the education we give the families and that's why we have the new patient teachings. It's the fact that we can sit with the families and say these are different opportunities – the research networks, the clinical trials, quality improvement, we're all part of that – because there is the ongoing process and there's that future and that ability to hopefully bring some of these opportunities. And then it's the research that we've done, again, looking at the comprehensiveness of how we deliver care, how we look at the impact of the care that we are delivering on the family.

And that some of the work that I had done with a former fellow, Dr. Hilary Michel, as well as the parental stressors and distress, understandably about having a child who has IBD. And that's some of the work we did with, again, one of our former fellows, Dr. Kevin Chaza and that kind of work informs us of what we need to do better.

So I'm glad that we think that we're doing well, but we don't really maintain who we are and that level of excellence that we should have as clinicians and as researchers and most importantly as advocates for our patients, if we're not saying, “What are we not doing well enough?” We should never rest on what we think we're doing pretty well, because then we'll stagnate. And that's why when we look at the research we do, we have to say then what questions are we not asking from a pathogenesis standpoint, from a treatment standpoint, from a collaborative care standpoint?

Dr. Williams: One of the things I wanted to touch on because you've mentioned a couple times that IBD is a chronic illness and you set patients up so great for success to start with, but pediatrics ends at some point. Can you talk a little bit about that transition from pediatrics to adult care and how you set up patients for that success?

Dr. Kim: So that's an area that I think we can always do better. And so first of all, I think sometimes as a pediatrician I have problems letting go. So I'm going to tell you, I've written some of the textbook chapters in it and I talk about it and I always tell people full disclosure, "I feel like I'm just a hypocrite in saying that I do it well." But that having been said, because part of it is I love my young adults and I'm like, "Oh yes, I guess we really do have to move you forward." So we do this in a couple ways. I think one is the annual IBD visits that we have set up, I think I briefly alluded to. So Whitney Gray is our IBD nurse practitioner so what we try to more and more encourage that once you have the word teen in your age, so 13, 14, we would like our young adult and teen patients to have at least one of their clinic visits on an annual basis as an annual IBD visit.

So during that visit, Whitney will not only do a routine clinical visit, but then we'll go through things like transition readiness scale so that she can identify the areas that we need to work on. Anxiety, depression screening, because we know that, that all comes into play in terms of your readiness. And so the thought is that if we can start doing the annual visits while our young adults are still teens, it's not such a shock to the system when they are actual adults who have to then transfer to adult care. Because I always say that transitioning is that readiness process. That's our responsibility to work on so that when we then transfer the care to our adult colleagues, we can do it in an effective manner. So that IBD annual visit piece is huge.

We also have a program called IBD Grow on an annual basis that has been co-chaired by Dr. Whitney Sunseri and again Whitney Gray. This is an annual educational conference that we have for our young adult patients, talking about topics that are specific to young adults. And so that's one of our ways of having outreach to our patients. And one of the things that we do is we actually have a panel every year of young adults who are in the process, who have already successfully transferred care to the adults. And so I think that's another really nice thing that we tried to do. And then the final piece, we identify ahead of time who some of the expert adult GI IBD experts are within the community. So we have a list and in fact, we have now started partnering actively with some of the practices through both UPMC Presbyterian as well as Allegheny Health Network so that we make it a warm handoff.

So we will reach out with the permission of our young adults to talk to the physicians at the respective institutions because we know that we need to look at where entrance will cover and we want to have that. So we'll have a warm handoff where we'll actually reach out, say this is the patient, John Doe, these are the basic synopses of the patient. Have that process so that we know that they are getting into the right hands at that transfer process. And then I will say that our adult GI colleagues have been great about then getting back to us.

Dr. Agnihotri: Wow, that's fantastic. So in our closing minutes, what do you envision for the next five years?

Dr. Kim: What do I-

Dr. Agnihotri: You've done so much and this is amazing about the program and learning about the transition and stuff. So are there areas that maybe the CHP community can help? More collaborations?

Dr. Kim: Oh, yeah.

Dr. Agnihotri: Funding?

Dr. Kim: So I think here at UPMC Children's for the IBD program, so what I envision are couple things. So we have the gastroenterologists, the pediatric surgeons, quality improvement, we have the trainees, we're going to get the parent mentoring program. But what I really envision is that we have a truly multidisciplinary clinic. So you have a lot of people, I'm going to tell you the biggest strength of the program we have right now are the people that are absolutely committed. And what I didn't mention, we're just talking about the front facing piece with the clinicians, the care providers. But the back piece, we have terrific nurses, we have amazing authorization specialists who ensure that our patients can get the coverage to get the care that they need. What I envision in the next five years is that we are able to have, and we're working toward this by the way, true multidisciplinary clinics very similar to what other divisions have already done. So I think transplant is a perfect example.

That when a patient comes to clinic, they can see their GI physician, the surgeon if needed, that they can meet with the social workers if there are specific issues that need to be addressed, the dieticians, which I think are huge and I hope at one point having also psychology embedded. And I think that's very feasible because we already have that model for other centers here within UPMC Children's. I know that the Department of Pediatrics and the hospital are very committed to providing that care.

So my job is to figure out a way to help make that happen and foster that type of Center. And I know that we've had the discussions because I really want it to be seamless for our patients. It shouldn't be hard to get here and get the care you need, it shouldn't be tough to have to coordinate it because I know that still happens. It's not easy being a parent and being a child teen who lives with a chronic illness and it shouldn't be a struggle sometimes to get some of that coordinated. And so honestly, that's on us and we need to do an even better job than I think we already are right now.

Dr. Williams: Do you have any social media handles or anything that you'd like to share with our listeners in case they'd like to look for more information about this and what's coming in the future for you all?

Dr. Kim: So do you want my mini Goldendoodle's Instagram account?

Dr. Williams: Both.

Dr. Kim: Just kidding.

Dr. Williams: I think both. We need Lexie.

Dr. Kim: She's Lexie_minidoodle. But anyways, that's not where you're going to get medical information. But I am on Med Twitter, it's S-C-K-I-M-C-H-P. And so again, that's basically my name, initials and CHP. And so what I'll often post is information, yes, there are still a few mini Goldendoodle tweets, but I'll tweet things that our amazing Peds GI division is doing. I will give highlights on major legislation and research advances in IBD. And again, I think a lot of it will just be just talking about my life here at UPMC Children's, which has been an absolute blessing and privilege, I love the people I work with, I can't think of a better group of folks. And so yeah, it's been a pretty cool six years.

Dr. Williams: That's amazing. And I assume the Inflammatory Bowel Disease Center can also be found on the main Children's website?

Dr. Kim: Yes, ma'am.

Dr. Williams: And if you need more contact information for them as well.

Dr. Kim: Absolutely.

Dr. Williams: We are so thrilled to have you here and to hear all of this wonderful work that you're doing, thank you so much for taking time out of your day. And thank you all to listening to That's Pediatrics.

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