title: Pediatric celiac disease patients who are lost to follow-up have a poorly controlled disease.
abstract: BACKGROUND
  Follow-up of celiac disease (CD) patients is recommended for gluten-free diet (GFD) adherence monitoring and complication detection. We recently showed that 35% of children with CD were lost to follow-up (LTFU). We aimed to characterize LTFU population, and thus identify compliance barriers to GFD and follow-up.
  
  
  METHODS
  50 LTFU patients were investigated using a telephone questionnaire, regarding frequency of follow-up, serology testing, and adherence to GFD (using the validated Biagi score). Fifty two regular follow-up patients served as controls.
  
  
  RESULTS
  LTFU patients had poor adherence to GFD (average Biagi score of 2.0 ± 1.4) compared to controls (3.0 ± 1.0, p < 0.001). Only 22% of LTFU performed periodic celiac serology testing compared to 82% of controls (p < 0.001). LTFU had higher prevalence of positive celiac serology tests (50% compared to 25% of controls, p = 0.01). Fewer LTFU were National Celiac Association members (24%) compared with controls (44%, p = 0.05). Regression analysis showed positive relationships between LTFU and poor adherence to GFD (R(2) = 0.26737, p = 0.001), older age at diagnosis (R(2) = 0.30046, p = 0.03), and non-membership in a celiac association (R(2) = 0.18591, p = 0.0001).
  
  
  CONCLUSIONS
  LTFU is associated with non-adherence to GFD and positive serology. Risk factors for LFTU should be identified and addressed in order to improve patient care.
authors.affiliation: Institute 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.
authors.forename: Liron
authors.initials: L
authors.lastname: Barnea
authors.forename: Yael
authors.initials: Y
authors.lastname: Mozer-Glassberg
authors.forename: Iva
authors.initials: I
authors.lastname: Hojsak
authors.forename: Corina
authors.initials: C
authors.lastname: Hartman
authors.forename: Raanan
authors.initials: R
authors.lastname: Shamir
mesh_terms: D000293:Adolescent; D016022:Case-Control Studies; D002446:Celiac Disease / Q000178:diet therapy* / Q000276:immunology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D059012:Lost to Follow-Up; D008297:Male; D015999:Multivariate Analysis; D010349:Patient Compliance / Q000706:statistics & numerical data*; D012044:Regression Analysis; D055815:Young Adult