5 trends to watch in pediatric inflammatory bowel disease care
Remission rates for pediatric inflammatory bowel disease (IBD) now exceed 80% at the top children's hospitals in the U.S., thanks to major advances in recent years. But the path to remission often involves trying multiple different treatment approaches, while patients struggle with debilitating symptoms.
As a national leader in remission rates and a founding member of the ImproveCareNow Network, the IBD program at Children’s Medical Center Dallas is working to change that.
“We’re constantly asking ourselves ‘How can we help these kids get into remission faster and improve their quality of life?’” says Bhaskar Gurram, M.D., Director of the Southwestern Pediatric IBD Program at Children’s Medical Center Dallas, the flagship hospital of Children’s Health℠, and Associate Professor at UT Southwestern. “IBD is nuanced and has many patient subsets. Our team is focused on clinical and research innovations that will improve outcomes by better addressing individual needs.”
In 2022, the team made significant progress in five key areas including new multidisciplinary clinics, unconventional medications, integrative medicine and research advances in precision medicine.
Integrating gastroenterology and surgery
About 20% to 30% of pediatric Crohn's disease patients have terminal ileum disease, which may cause strictures and progress rapidly. Research shows that surgery early in the disease course results in better outcomes than medical management. But many families are hesitant about surgery, especially as a frontline treatment.
Easing their fears is one of the reasons Children’s Health launched a multidisciplinary IBD clinic in November 2022 that integrates gastroenterology and surgical care.
“We’ve always collaborated with surgeons on these cases, but now we meet together with patients from the very first conversation about surgery as a treatment option," Dr. Gurram says. "Together we answer families’ questions and give them peace of mind."
Though patient-facing collaboration between GI and surgery is more common in adult care, Children's Health is one of the first in the U.S. to create this clinic for the subsets of pediatric patients that benefit from surgery.
Collaborating with immunology on complex IBD cases
Research shows that immunological expertise and unconventional treatments can benefit three categories of IBD patients:
- Very early onset inflammatory bowel disease (VEOIBD) patients, which describes IBD in patients younger than 6 years. The chances of underlying immune deficiency and dysregulation disorders presenting as IBD is well recognized in VEOIBD.
- Medically refractory IBD patients, which describes patients that have not responded to two or more conventional medications that are dose optimized.
- Patients with immunodeficiency disorders who present with IBD and/or other gastrointestinal issues.
In 2016, Children’s Health opened the pediatric intestinal immunology clinic, which is still one of the few pediatric clinics in the U.S. where GI and immunology see patients together.
Christian Wysocki, M.D., Pediatric Immunologist at Children’s Health and Associate Professor at UT Southwestern, evaluates these patients for underlying immune deficiency disorders and provides valuable expertise on unconventional medications, including tacrolimus, sirolimus, interleukin-1 antagonists, abatacept, JAK inhibitors and others. Part of the workup includes genetic testing, which enables the team to uncover specific mutations and identify targeted medications for some patients.
“We were able to get one patient into remission by using Orencia (abatacept), an immunosuppressant that targets their specific mutation,” Dr. Gurram says. “If a gastroenterologist would have seen this patient alone, we would have tried conventional IBD medications, like Humira and Remicade. By partnering with immunology, we were able to identify and address the root cause of their disease and personalize treatment.”
Looking to 2023 and beyond, the team is focused on research that aims to better understand the various immunologic pathways that lead to IBD and inform the development of more targeted drugs.
Incorporating integrative medicine at the beginning of treatment
Studies show that pediatric IBD patients are increasingly using some form of complementary therapies, with one study conducted at a tertiary care pediatric IBD center showing as high as 84% of their surveyed patients using a complementary modality (Serpico et al, 2016, PMID: 26960176). But only about a third of gastroenterologists have initiated a conversation about these therapies with their patients, one study shows (Gallinger et al, 2014 PMID: 25294717).
“IBD patients are already interested in or using these therapies, like diet, supplements and acupressure,” says Sindu Vellanki, M.D., Pediatric Gastroenterologist at Children’s Health and Assistant Professor at UT Southwestern, who recently joined the team. “Our goal is to help patients incorporate integrative medicine from the time of diagnosis, and ensure that the therapies they’re using are safe, effective and complementary to their medications.”
Dr. Vellanki is developing an initial integrative assessment that evaluates factors like stress, sleep and nutrition that can contribute to IBD flare-ups or impact psychosocial comorbidities. From there, Dr. Vellanki provides the latest evidence-based recommendations for complementary therapies that may benefit them.
These recommendations typically include dietary guidelines, like the anti-inflammatory diet and a curcumin (an active component of turmeric) supplement. She also recommends practices to ease acute symptoms, such as acupressure patients can do on themselves for nausea and a breathing exercise to calm stress.
“Many families ask ‘What can we do at home to help our child?’ Integrative medicine not only helps our patients manage their condition, but it also empowers them to have some control in their healing process,” Dr. Vellanki says.
Dr. Vellanki is also researching ways to make complementary therapies more accessible to pediatric IBD patients. One recent study analyzed the feasibility of a virtual format for a mindfulness-based stress reduction course. The findings will be published this year.
Advancing precision medicine through multicenter research
Pediatric multicenter studies (like RISK and PROTECT) showed that aggressive treatment at the time of IBD diagnosis leads to better outcomes. But questions remain about identifying the best medication for each patient.
Children's Health is one of 12 sites participating in a multicenter research project to answer those questions. The Cohort for Pediatric Translational and Clinical Research in IBD (CAPTURE IBD) is a longitudinal study that will begin enrolling in 2023 to collect in-depth clinical information from thousands of pediatric IBD patients, including electronic health record data, patient-reported outcomes and bio-samples.
“We hope to use the data to create algorithms that will help match each patient with the best medication for them,” says Luis Sifuentes-Dominguez, M.D., Pediatric Gastroenterologist at Children’s Health and Assistant Professor at UT Southwestern.
As a high-volume program, Children's Health has more than 500 active IBD patients and aims to enroll hundreds of patients in this study. Preliminary data for the study is expected by 2026.
From bedside to bench: Using patient insights to drive research
In addition to collaborating with other centers to further IBD research, Children’s Health is also focused on fostering collaboration between our clinicians and researchers.
“Innovation certainly moves from bench to bedside, but it’s also important that we use our bedside insights to ask the right research questions and pursue answers that have the biggest potential impact," says Jacobo Santolaya, M.D., Assistant Professor at UT Southwestern who recently became an attending gastroenterologist at Children’s Health after completing his fellowship focused on basic science research. "One of the research areas I focused on – enteroendocrine cells (EECs) in the colon and the microbiome – complements many insights I gathered at the bedside regarding obesity and nutrition.”
Dr. Santolaya’s research was recently awarded Poster of Distinction at NASPGHAN and he gave an oral presentation of his research at Digestive Disease Week Conference 2022. In the future, his research could lead to novel discoveries that ultimately affect patients at the bedside, whether it be through better understanding of their disease or development of novel therapeutic treatments.
As an academic clinician, he brings his bedside insights to the weekly IBD program meeting, which includes all providers as well as researchers and research coordinators. He collaborates with his research colleagues on future study topics and plans to contribute to current studies by enrolling future patients and obtaining tissue samples.
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