The Impact of Quality of Care in Patients with Pediatric IBD
In this podcast episode, Jeremy Adler, MD, MSc, discusses the barriers to access to care in patients with pediatric inflammatory bowel disease, the gaps in the research of Crohn disease in pediatric patients, and how the treatment of patients with Crohn disease can differ in pediatric patients compared with adult patients. Dr Adler also spoke about these topics during his session at the Advances in Inflammatory Bowel Diseases (AIBD) conference 2022 titled "The Real-World Impact of Quality of Care in Pediatric IBD Care."
- Adler J. The real-world impact of quality of care in pediatric IBD care. Talk presented at: AIBD 2022; December 5-7, 2022; Orlando, FL. Accessed October 12, 2022. https://www.advancesinibd.com/
Jeremy Adler, MD, MSc, a pediatric gastroenterologist and the director of the Pediatric Inflammatory Bowel Disease program at the C.S. Mott Children’s Hospital at the University of Michigan Hospital in Ann Arbor, Michigan.
Jessica Ganga: Hello, everyone. And welcome to another installment of Podcasts360, your go-to resource for medical news and clinical updates. I'm your moderator, Jessica Ganga, with Consultant360, a multidisciplinary medical information network.
Dr Jeremy Adler is here to speak with us today about his session at AIBD 2022 titled, The Real World Impact of Quality of Care in Pediatric IBD Care. Dr. Adler is a pediatric gastroenterologist and the Director of the Pediatric Inflammatory Bowel Disease Program at the C.S. Mott Children's Hospital at the University of Michigan Hospital in Ann Arbor, Michigan.
Thank you for joining us today, Dr Adler. Please provide a brief overview of your session at AIBD 2022, 'The Real World Impact of Quality of Care in Pediatric IBD Care.'
Jeremy Adler, MD, MSc: Yeah, thanks. I'm honored to be giving this talk at that session. There's so much to cover in a short time. I'm going to talk about many aspects of quality of care, and I think the key feature is that it's important for us to be delivering the right treatments to the right patient at the right time. And this covers a broad area. Everything from making sure that we minimize the delay in diagnosis and treatment so we get started on treatment right away. And also, making sure that we're really starting off with our best first choice of medication because oftentimes that's our best chance to get things under control.
I'm going to talk about quality improvement and how that has really helped to improve care, both in terms of improving the delivery of care for pediatric patients with inflammatory bowel disease, but also improving outcomes for kids with IBD. And I'm going to spend a little bit of time focusing on areas of care where we still need to improve. Some of those include barriers to care, some related to social determinants of health and equity, because we really need to be giving the best care to everybody.
Jessica Ganga: How does the treatment of Crohn's disease differ in pediatric patients compared with adult patients? And then how do you believe pediatric gastroenterologists can ensure the best care plan for their patients?
Dr Adler: Yeah, these are really good questions. Many aspects of Crohn's disease are similar or the same in children and in adults, but there are some really key differences, and one important aspect is that Crohn's disease tends to be more aggressive in kids than in adults. Children are more likely to develop fistulas and strictures and certain disease complications than adults are. And that emphasizes the importance of getting the disease under control before complications develop, to prevent those complications.
The other thing that's specific to kids is kids are growing and developing both physically and emotionally. And it's not just good enough to improve symptoms, it's not just good enough to make sure that kids are feeling better. But we need to make sure that they have catch up growth, they normalize their growth. They grow to their full potential. And that development, both physical development in terms of puberty but also emotional development and growth is really an important aspect of any child growing up, particularly a kid with a chronic illness. On that note, it's really important to be supporting kids' mental health because chronic disease is hard for anybody, and it's particularly ... and adolescence is a difficult time for everybody. And I think both at the same time is particularly challenging.
And then the other thing is we all in medicine know of the downsides of steroids, of prednisone and things like that. They have lots of side effects, but they're particularly harmful for growing children. And they can cause weakening of the bones that can last throughout life, to the point where people develop osteoporosis at an early age, can cause stunting of growth. So we try very hard to avoid steroids, at least avoid prolonged steroids in children with Crohn's disease. Or ulcerative colitis, for that matter.
Jessica Ganga: What are some emerging therapies for treating Crohn's disease in pediatric patients?
Dr Adler: Yeah, that's a tricky question. It depends on what you mean by emerging therapies. I mean, on the one hand, we have access to the same medicines that the adult gastroenterologists have access to. There's always a delay in approving these medicines for pediatrics. So in some ways, what's already available for adults might be the emerging therapies for pediatrics because they haven't yet gone through the process of FDA approval. But the pediatricians and pediatric gastroenterologists have always been on the leading edge of using biologic medications and small molecules, the newer medicines. Mostly because they're so effective at not only treating the disease, but preventing the need for steroids. And that continues to be at the forefront of our minds.
So I'd say in terms of emerging therapies, it's the same medicines, we just want to be able to have access to kids. The issue is ... one is approval. And two is getting the dosing right for smaller children, because they're often not studied in younger children at the beginning.
Jessica Ganga: What are some of the gaps involving pediatric Crohn disease, in your opinion?
Dr Adler: Yeah, and this is actually related to the previous question. So one of the big gaps is access to medication. So some of the newer medicines ... maybe not even new anymore. Ustekinumab, Vedolizumab, Upadacitinib. These new medicines aren't approved by the FDA. And it's not to say they don't work for pediatrics. And we still use them, because when other medicines don't work, you have to turn to the medicines available. But the gap, the lag in time between the approval for these medicines for use in adults and the approval for these medicines for use in kids is many, many years long. And that's unfortunate, because it makes it difficult to treat kids.
I'd say that's more of the clinical gap. It's clinical, but also research is ... since kids have tend to have more aggressive disease, how do we best treat them not only so that they feel well, but to prevent complications? And I think prevention is a really important piece of this. If we could prevent fistulas, prevent strictures, it would be much better than to try and treat them once those complications develop. It's really hard to treat some of those things.
And I think one of the other gaps in this, and this is both, again, both a research and a clinical gap, is in the youngest children. The children with very early onset IBD, which is kids whose disease first presents itself under age six years. They tend to have at least a higher likelihood of having some immune dysregulation or other underlying features of the immune system or genetics that are contributing to that form, their version of inflammatory bowel disease. And there's still much that we need to learn about those kids.
There's new immune pathways and genetic variants that are being discovered, pretty much every month or every week. And some of those will both provide an opportunity, there may be different treatments for some of those immune pathways. But they also are a tremendous challenge for taking care of those kids. So there's a lot we still need to learn in that space of the VEO IBD, the very early onset IBD.
Jessica Ganga: You mentioned in the first question when you were describing your session, barriers. What are some of the barriers in terms of pediatric care of Crohn's disease, or IBD in general?
Dr Adler: Yeah, I think of barriers in a few ways. I mean, one is the barriers to diagnosis. And that can be everything from the first line physician, whether it's a primary care physician or emergency room or urgent care, the first line physician recognizing that this is inflammatory bowel disease in the first place. Because there are many different ways that IBD can present itself. And particularly Crohn's disease can have varying ways of showing itself in kids. And sometimes it's simply they're just not growing well or they have what appears to be mystery anemia. They don't always have the classic textbook symptoms. And if the primary care physician doesn't recognize that this is Crohn's disease, they may refer them maybe to another specialist or maybe focus on other aspects of health.
And while they're trying to do right for the patient, that can lead to a delay in diagnosis. And the longer the disease goes untreated, the worse it gets. So there's first, the recognition of the disease and then there's the access to a gastroenterologist. There's not nearly as many pediatric gastroenterologists as there are adult gastroenterologists, and everybody seems to be short-staffed. So sometimes it takes a while to get kids in, even if they're suspected of having inflammatory bowel disease. So there's that aspect of diagnostic delay.
Dr Adler: And then the treatment delay is really frustrating. So once you have diagnosed a child with Crohn's disease or ulcerative colitis, the medicines that really are the appropriate first line treatment, many insurance companies don't have policies in place that literally are barriers to care. They don't allow the appropriate standard of care medications to be used as the first line treatment and they want you to try a couple of other medicines, which are well documented to be ineffective for Crohn's disease, but they have policies that say you need to try and fill this medicine first. And what that does is that leaves kids sicker longer and the disease gets worse. So that's a barrier that's created by policy, requiring people to be treated with medicines that are known to be ineffective.
So those are two aspects of barriers, but those cut across all people. But the one other issue that I think comes up is failure to recognize that somebody might be at risk of having inflammatory bowel disease. And I think this is particularly true for non-white patients. Because historically, the literature shows that IBD is more common among white patients, among patients of Ashkenazi Jewish ancestry. And while that might be true, it certainly happens in all populations on earth. And I think there's a problem sometimes that people don't recognize that someone might have Crohn's disease because they don't fit into the textbook picture of what they expect.
And I think that ... through nobody's fault. But it can lead to diagnostic delay. Which again, leads to people being sicker at the time they're diagnosed. So I think we have to educate our peers. And really raise the level of awareness and raise the level of suspicion that anybody can have inflammatory bowel disease, from any race, any ethnic background, young or old. And so physicians need to be thinking about this.
Jessica Ganga: And it seems that the overarching message is delaying care at any age could lead to more problems down the line.
Dr Adler: Yeah, I think that's exactly right. Delaying care, both in the sense of delaying diagnosis and in the sense of delaying getting on the right therapy, that's longer time that the disease is active, longer time that the disease has time to cause damage. And it does lead to worse outcomes.
Jessica Ganga: Going back to your session, what are the overall take home messages that you believe will come from it?
Dr Adler: Yes, thank you. So I'd say the overall theme of the session is that we really need to be improving care for all of our patients. And that is both relating to improving the processes of care, so we are providing the best care to everybody. But also paying attention to those groups that we may not be paying enough attention to, to make sure we're really reaching everyone with our improvement efforts.
And I think beyond our own practice of medicine, our own practice of GI, I think advocacy is really important. We do this every day, advocating for our patients when we're petitioning an insurance company. But I think we need to advocate both on the individual patient level, but also on the local and national level to change policies that stand in the way of providing the right care, or the appropriate first line care to our patients.
Jessica Ganga: Thank you for taking time out of your day to speak with us. Is there anything else that you'd like to add?
Dr Adler: No, but I really appreciate it. I really appreciate your attention to this because this is really, really important. And if you're going to be at this session, I'll show some data on how much progress we've made. And I don't want to paint a picture of gloom and doom because the care we provide is so much better than it used to be, and the outcomes are so much better than they used to be, but we still can do better.
Jessica Ganga: Well, thank you so much, Dr. Adler. We do appreciate you taking time out of your day to speak with us.
Dr Adler: Thank you very much. I appreciate it.