Children's Hospital Colorado

Parent Perspectives on Exclusive Enteral Nutrition for Pediatric Crohn’s Disease Treatment

January 19, 2021

Points for parents

  • Children’s Colorado researchers are the first to study parents’ views on a nutritional therapy called exclusive enteral nutrition to treat pediatric Crohn’s disease.
  • The formula-based treatment is effective and commonly used in other countries, but only a few U.S. pediatric hospitals, including Children’s Colorado, use it regularly.
  • The cost of exclusive enteral nutrition therapy was cited as a top barrier by parents, followed by difficulty in social situations.

Points for providers

  • There is a disconnect between providers and patients about exclusive enteral nutrition outcomes for treating Crohn’s disease.
  • Survey results uncovered opportunities to improve provider-patient communication, adherence to treatment and advocacy for medical coverage of exclusive enteral nutrition.
  • Inflammatory bowel disease affects 1.6 million people in the U.S.
  • Of those, 25% are 18 and under.
  • Approximately 80% of Crohn’s disease patients achieve remission with exclusive enteral nutrition.
  • Greater than 80% of caloric intake comes from formula when using exclusive enteral nutrition therapy.

Research background: understanding options and barriers for treating pediatric Crohn’s disease

Crohn’s disease is a form of inflammatory bowel disease. Treatments for Crohn’s disease differ based on severity and can include immune modulating medications, which are effective, but they are linked to significant side effects. Dietary therapies are a promising option but there are few studies on their efficacy. Exclusive enteral nutrition is a formula-based, nutritional therapy treatment that is well-studied, leads to mucosal healing, and can result in remission for up to 80% of patients with pediatric Crohn’s disease.

Exclusive enteral nutrition is a common treatment in other countries but is used infrequently in the United States. Despite its effectiveness and use in other countries, studies have suggested patients with Crohn’s disease prefer to use other therapies. Nonadherence is often cited for the lack of use, but the patient’s opinion has not been studied.

Researchers at the Digestive Health Institute at Children’s Hospital Colorado sought to better understand the perspective of parents on the barriers to using exclusive enteral nutrition.

Research methods: a survey of parents of Crohn’s disease patients about exclusive enteral nutrition

Between June and August 2017, researchers mailed and emailed surveys to parents of patients with Crohn’s disease seen at Children’s Colorado between March 2015 and March 2017. A multidisciplinary team at the Digestive Health Institute created the survey and modified it in an iterative process. Researchers reviewed patient charts to compare provider perspectives with survey responses.

Research results: discussions about and barriers to treatment with exclusive enteral nutrition

The survey was sent to 184 parents and 115 parents responded.

Discussions

Regarding discussions about exclusive enteral nutrition with gastroenterologists:

  • 90% - knew of the therapy
  • 17% - never discussed it with their gastroenterologist
  • 19% - discussed it but weren’t interested
  • 18% - discussed it but it wasn’t recommended by their gastroenterologist

Barriers

Thirteen percent of respondents were currently using exclusive enteral nutrition. Common barriers included:

  • 23% - cost/finances
  • 18% - difficultly in social situations

Thirty-three percent of respondents were treated by exclusive enteral nutrition in the past. Common reasons users said they stopped included:

  • 37% - enteral nutrition not working
    • Of these 14 cases, the gastroenterologist cited exclusive enteral nutrition was not working in four and was successful in three; six were cited as nonadherent and one case had no reason specified.
  • 21% - therapy complete

Research discussion: opportunities to improve patient education and adherence to exclusive enteral nutrition treatment

Although exclusive enteral nutrition is effective, U.S. gastroenterologists commonly say patients don’t want to use it, although little is known about why.

Study results revealed several important insights:

  • The disconnect between patient and provider on treatment outcomes spotlights the need for improved communication between patients and providers.
  • Hispanics are less likely to report using exclusive enteral nutrition than non-Hispanics.
    • There is a need to understand and address this potential disparity in the use of dietary therapies.
  • Subsidizing exclusive enteral nutrition could improve adherence and address cost.
  • Behavioral counseling could improve adherence and address social discomfort.

Opportunities for the future include:

  • Conducting research on discussing dietary therapies, delivery of patient information and using decision aids
  • Creating better exclusive enteral nutrition physician guidelines
  • Using survey results to advocate for policy changes to improve medical food coverage

Research conclusions: how to expand exclusive enteral nutrition treatment for Crohn’s disease

New approaches and tools will be necessary to implement exclusive enteral nutrition for pediatric Crohn’s disease, improve patient-provider discussions, and meet patient needs around social situations and costs of therapy.