title: Health-related quality of life in adolescents with screening-detected celiac disease, before and one year after diagnosis and initiation of gluten-free diet, a prospective nested case-referent study.
abstract: BACKGROUND
  Celiac disease (CD) is a chronic disorder in genetically predisposed individuals in which a small intestinal immune-mediated enteropathy is precipitated by dietary gluten. It can be difficult to diagnose because signs and symptoms may be absent, subtle, or not recognized as CD related and therefore not prompt testing within routine clinical practice. Thus, most people with CD are undiagnosed and a public health intervention, which involves screening the general population, is an option to find those with unrecognized CD. However, how these screening-detected individuals experience the diagnosis and treatment (gluten-free diet) is not fully understood. The aim of this study is to investigate the health-related quality of life (HRQoL) of adolescents with screening-detected CD before and one year after diagnosis and treatment.
  
  
  METHODS
  A prospective nested case-referent study was done involving Swedish adolescents who had participated in a CD screening study when they were in the sixth grade and about 12 years old. Screening-detected adolescents (n = 103) and referents without CD who participated in the same screening (n = 483) answered questionnaires at the time of the screening and approximately one year after the screening-detected adolescents had received their diagnosis that included the EQ-5D instrument used to measure health status and report HRQoL.
  
  
  RESULTS
  The HRQoL for the adolescents with screening-detected CD is similar to the referents, both before and one year after diagnosis and initiation of the gluten-free diet, except in the dimension of pain at follow-up. In the pain dimension at follow-up, fewer cases reported problems than referents (12.6% and 21.9% respectively, Adjusted OR 0.50, 95% CI 0.27-0.94). However, a sex stratified analysis revealed that the significant difference was for boys at follow-up, where fewer screening-detected boys reported problems (4.3%) compared to referent boys (18.8%) (Adjusted OR 0.17, 95% CI 0.04-0.73).
  
  
  CONCLUSIONS
  The findings of this study suggest that adolescents with unrecognized CD experience similar HRQoL as their peers without CD, both before and one year after diagnosis and initiation of gluten-free diet, except for boys in the dimension of pain at follow-up.
authors: Department of Public Health and Clinical Medicine, Epidemiology and Global Health, Umeå University, Umeå, Sweden. katrina.nordyke@epiph.umu.se
authors: Katrina
authors: K
authors: Nordyke
authors: Fredrik
authors: F
authors: Norström
authors: Lars
authors: L
authors: Lindholm
authors: Hans
authors: H
authors: Stenlund
authors: Anna
authors: A
authors: Rosén
authors: Anneli
authors: A
authors: Ivarsson
mesh_terms: D000293:Adolescent; D016022:Case-Control Studies; D002446:Celiac Disease / Q000175:diagnosis* / Q000178:diet therapy*; D002648:Child; D055050:Diet, Gluten-Free; D005260:Female; D005500:Follow-Up Studies; D006304:Health Status; D006801:Humans; D008297:Male; D008403:Mass Screening; D011446:Prospective Studies; D011788:Quality of Life; D011795:Surveys and Questionnaires; D013548:Sweden; D013997:Time Factors; D016896:Treatment Outcome