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Reversal of Intestinal Failure in Children With Tufting Enteropathy Supported With Parenteral Nutrition at Home

Iona Ashworth1, Alexander Wilson2, Samuel Aquilina3

  • 1Cardiff Medical School, Cardiff, Wales.

Journal of Pediatric Gastroenterology and Nutrition
|January 16, 2018
PubMed

Insights

Patients with intestinal epithelial dysplasia (IED) and tufting enteropathy (TE) treated with home parenteral nutrition (PN) have a high survival rate and over 50% chance of achieving enteral autonomy. Even with long-term PN dependence, employment is achievable, avoiding the need for intestinal transplant.

Area of Science:

  • Gastroenterology
  • Pediatric Nutrition
  • Genetics

Background:

  • Intestinal epithelial dysplasia (IED), also known as tufting enteropathy (TE), is a rare condition causing intestinal failure (IF).
  • Management of IF often involves long-term home parenteral nutrition (PN).
  • The long-term outcomes for patients with IED/TE managed by specialized intestinal failure rehabilitation services are not well-documented.

Purpose of the Study:

  • To review the long-term outcomes of pediatric patients with IED/TE treated with home PN.
  • To assess survival rates, nutritional independence, growth, and long-term functional status.
  • To evaluate the impact of home PN management by an IF rehabilitation service.

Main Methods:

  • Retrospective review of infants diagnosed with IF and TE histology between 1986 and 2010.
  • Data collection included patient outcomes, nutritional support (PN/enteral), growth parameters, bone age, and employment status.
  • Analysis of long-term follow-up data up to 30 years, including genetic analysis for EPCAM gene mutations.

Main Results:

  • Overall survival was 92%, with 100% survival in UK patients.
  • 50% of surviving patients achieved enteral autonomy (weaned off PN).
  • Growth parameters and bone mineralization improved with age, and patients achieved educational and employment milestones.

Conclusions:

  • IED/TE patients managed with home PN have a >92% chance of long-term survival.
  • Over 50% achieve enteral autonomy by early adulthood, with 75% achieving it by age 25.
  • Home PN management by IF services enables patients to achieve independence and employment, potentially avoiding intestinal transplantation.
Abstract

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