Clinician-to-Clinician Update Clinician-to-Clinician Update

Care Networks Improve Outcomes in Pediatric Inflammatory Bowel Disease

June 2017

Coordinated research and care networks are speeding the identification and implementation of effective treatment for children affected by inflammatory bowel disease (IBD). An estimated 30,000 new cases of IBD are reported each year,1 with approximately 20-25% of all cases of IBD emerging in childhood.2, 3 IBD can pose serious challenges to a child’s health and development. Coordinated care and new treatment regimens, however, are allowing more patients to achieve clinical remission and sustain good health outcomes.

Most children receive diagnosis after the age of 10, although very young patients can present with the condition.4 While the pathogenesis of IBD remains unclear, research has identified more than 140 genetic variants associated with the condition.5 Gene variations in Crohn’s disease seem to be associated with microbe recognition and immune response while those in ulcerative colitis seem to be connected to intestinal function and barrier integrity.6

Common symptoms include abdominal pain and diarrhea.6 Rectal bleeding is associated with both ulcerative colitis and Crohn’s disease, while perianal disease is seen primarily with Crohn’s disease. Children with upper gastrointestinal disease can experience nausea or vomiting or be asymptomatic. IBDs can also be associated with fevers and anemia,6 as well as arthritis.7 Weight loss appears most often in children with Crohn’s disease, a reported 20-40% among outpatients with the condition, and these children can be at risk of growth failure.6


Therapies for active IBD in children include aminosalicylates, corticosteroids, immunomodulators, biologics, and nutritional therapy, particularly exclusive enteral nutrition (EEN) in inducing and maintaining remission of recent-onset Crohn’s disease.8 Early use of corticosteroids in treating active Crohn’s disease has found support in the literature6, although steroid-sparing strategies are preferred and treatment follows a staged approach. Biologics are often used when clinicians are unable to wean patients off steroids in 4 to 6 months.

In a randomized multisite trial, the anti-TNF alpha chimeric monoclonal antibody known as infliximab was found to have achieved a clinical response at 10 weeks in 90% of pediatric patients with Crohn’s disease. More than 50% were in remission at 54 weeks on the medication.6

EEN is an established intervention for inducing remission of Crohn’s disease; however, the mechanism of response is not well understood. Partial enteral nutrition (PEN) with a tailored exclusion diet has been found effective in preventing recurrence of Crohn’s disease.8 Further controlled studies are needed on the impact of diet on treating or maintaining remission in ulcerative colitis. Nevertheless, managing the diet of IBD patients is important to addressing over- or undernourishment and can help in improving associated conditions, such as functional gut symptoms, fat malabsorption, or kidney stones.9 Medications for IBD can put patients at increased risk of infection or other complications. Current guidelines recommend that young patients with IBD receive routine childhood immunizations. Those on immunosuppressive therapies, however, should not receive live vaccines, and the efficacy of inactive vaccines for patients on these medications may be diminished. Response to immunizations should be checked upon diagnosis of IBD, and vaccinations should be administered preferably before starting immunosuppressive therapy.5

A collaborative approach has boosted outcomes for these patients. The international Improve Care Now network ( brings together more than 90 care centers in the effort to identify effective, evidence-based care. Among young patients at Improve Care Now network centers, 93% have satisfactory growth, and 80% are in remission.10 A network member, University of Minnesota Masonic Children’s Hospital improves on this average, reporting that 89% of its IBD patients are in remission, with 73% achieving a sustained clinical remission.11


  1. Kugathasan, S, et al. Epidemiologic and clinical characteristics of children with newly diagnosed inflammatory bowel disease in Wisconsin: a statewide population-based study. J of Pediatr. 2003;143,3:525-531.
  2. Dubinsky M. Special issues in pediatric inflammatory bowel disease. World J Gastroenterol. 2008;14:413-420.
  3. Baldassano RN, Piccoli DA. Inflammatory bowel disease in pediatric and adolescent patients. Gastroenterol Clin North Am. 1999;2:445-458.
  4. Heyman, MB, Kirschner, BS, Gold, BD, at al. Children with early-onset inflammatory bowel disease (IBD): analysis of a pediatric IBD consortium registry. J Pediatr. 2005;6:35-40.
  5. Lu, Y, Bousvaros, A. Immunizations in children with inflammatory bowel disease treated with immunosuppressive therapy. Gastroenterol Hepatol. 2014;10.6:355-363.
  6. Rabizadeh, S, Dubinsky, M. Update in pediatric inflammatory bowel disease. Rheum Dis Clin N Am. 2013;39:789-799.
  7. Passo MH, Fitzgerald JF, Brandt KD. Arthritis associated with inflammatory bowel disease in children: relationship of joint disease to activity and severity of bowel lesion. Dig Dis Sci.1986;31:492.
  8. Sarbagili-Shabat C, Sigall-Boneh R, Levine, A. Nutritional therapy in inflammatory bowel disease. Current Opinion in Gastroenterology. 2015;31.4:303-308.
  9. Halmos E, Gibson PR. Dietary management of IBD—insights and advice. Nature Reviews. 2015:12:133-146.
  10. Improve Care Now –Purpose and Success. Accessed March 10, 2017.
  11. University of Minnesota Masonic Children’s Hospital presentation on IBD data. Dec. 12, 2016.

When to refer

The University of Minnesota Health pediatric gastroenterology program is ranked among the top in the nation by U.S. News & World Report. University of Minnesota Masonic Children’s Hospital is a founding member of Improve Care Now, an international group of care centers that share research and establish evidence-based models of care for treating inflammatory bowel disease (IBD). We are the only such center in the Twin Cities metro area. Patients within Improve Care Now centers enjoy good outcomes, and 89% of our patients with IBD are in remission, with 73% achieving a sustained clinical remission.

We provide the following services: growth assessment and complete IBD diagnostic evaluations, nutritional evaluations and therapy, individual treatment planning, and follow-up care. We also provide care coordination, have a parental support committee, and offer support services to our patients.

Our pediatric gastroenterologists are also specialists in the treatment of growth disorders, cystic fibrosis, liver disease, intestinal failure, and pancreatitis.

Multidisciplinary, Collaborative Care

We coordinate with referring physicians at each treatment phase to provide uninterrupted care for youth with gastroenterological conditions. Our pediatric gastroenterologists work closely with pediatric specialists in nutrition, endocrinology, rheumatology, and psychology. University of Minnesota Health pediatric ophthalmologists and dermatologists provide regular screening for patients with IBD whose medications are associated with an increased risk of eye complications or skin cancers. Our immunology collaborators screen pediatric patients to manage risk of infections. We support our patients’ emotional growth and development and provide access to Camp Oasis, a residential summer program for children with IBD available through the Crohn’s and Colitis Foundation of America.

We strive to support referring physicians in our shared goal of helping youth with IBD take control of their health and thrive alongside their peers.

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