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Pediatric celiac disease patients who are lost to follow-up have a poorly controlled disease

Liron Barnea1, Yael Mozer-Glassberg, Iva Hojsak

  • 1Institute of Gastroenterology, Nutrition and Liver Diseases, Schneider Children's Medical Center of Israel, Petach Tikva; Sackler Faculty of Medicine, Tel-Aviv University, Tel Aviv, Israel.

Digestion
|December 23, 2014
PubMed

Insights

Children with celiac disease (CD) who are lost to follow-up (LTFU) show poor gluten-free diet (GFD) adherence and higher rates of positive serology. Identifying and addressing LTFU risk factors is crucial for improving CD patient care.

Area of Science:

  • Pediatric Gastroenterology
  • Immunology
  • Dietary Medicine

Background:

  • Regular follow-up is essential for monitoring celiac disease (CD) patients on a gluten-free diet (GFD).
  • A significant portion (35%) of children with CD are lost to follow-up (LTFU).
  • Understanding LTFU barriers is critical for improving patient adherence and outcomes.

Purpose of the Study:

  • To characterize the population of pediatric celiac disease patients lost to follow-up.
  • To identify barriers to gluten-free diet (GFD) adherence and regular medical follow-up in this population.

Main Methods:

  • A telephone questionnaire was administered to 50 pediatric celiac disease patients lost to follow-up (LTFU).
  • The questionnaire assessed follow-up frequency, serology testing, and GFD adherence using the Biagi score.
  • Fifty-two patients with regular follow-up served as controls for comparison.

Main Results:

  • LTFU patients exhibited significantly poorer GFD adherence (Biagi score 2.0 vs. 3.0) and lower rates of periodic serology testing (22% vs. 82%) compared to controls.
  • LTFU patients had a higher prevalence of positive celiac serology (50% vs. 25%).
  • Regression analysis identified poor GFD adherence, older age at diagnosis, and non-membership in a celiac association as significant risk factors for LTFU.

Conclusions:

  • Loss to follow-up (LTFU) in pediatric celiac disease is strongly associated with non-adherence to the gluten-free diet (GFD) and positive serology.
  • Identifying and addressing risk factors for LTFU, such as poor adherence and lack of support, is essential for enhancing patient care and outcomes.
Abstract

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