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

BackgroundCeliac 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.MethodsA 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.ResultsThe 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).ConclusionsThe 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.

Quality of life in children with celiac disease: A paediatric cross-sectional study

“…This result is in contrast with previous studies showing that dietary restrictions could be difficult to accept and follow, especially during adolescence, a critical period for maintaining the adherence to the GFD [26]. However more recent studies showed similar QOL in adolescents with screening-detected CD as their peers without CD, both at diagnosis and after one year of GFD [27]. Our results should be interpreted with caution, because, as mentioned above, recruited adolescents were strictly adherent to the clinical follow-up and to the diet, therefore possibly reporting a better QOL.…”

Health‐Related Quality of Life in Spanish Children With Coeliac Disease

“…This phenomenon observed in most CD studies (6,9,22,26,35,36) could be because of the higher prevalence of the disease in females (3,7,8,18,(37)(38)(39)(40)(41)(42)(43), and also to their greater concern about the disease (7). We effectively observed that more mothers than fathers completed the questionnaire, as also reported by other authors (6,9,17).…”

Rising incidence of celiac disease in the Netherlands; an analysis of temporal trends from 1995 to 2010

“…Patients detected in screening studies tend to be less symptomatic and up to 51% is without symptoms [38]. The quality of life of screening-detected patients is not significantly different from that of non-celiac controls [39,40], and their quality of life does not benefit from a gluten-free diet [41]. Increased risk of malignancies has frequently been cited as a reason for population screening.…”