Long-term Health and Quality-of-Life Consequences of Mass Screening for Childhood Celiac Disease: A 10-Year Follow-up Study

Abstract

Identification by mass screening led 10 years later to health improvement in 66% of children without deterioration of generic health-related quality of life. There is a good compliance after mass screening. In a research setting, delaying treatment for children without symptoms seems to be an option after a positive screening test. Long-term follow-up studies are needed to assess possible long-term complications in untreated, nonsymptomatic celiac disease.

At-Risk Screened Children with Celiac Disease are Comparable in Disease Severity and Dietary Adherence to Those Found because of Clinical Suspicion: A Large Cohort Study

“…12,37 The present study confirmed the results of our previous survey-based study, in which the diagnostic approach also had no effect on dietary adherence, 15 and similar observations have recently been reported from the Netherlands and Sweden. 12,14 In contrast, in an earlier Italian study only 23% of screen-detected adolescents had satisfactory adherence to a gluten-free diet five years after the celiac disease diagnosis. 10 It must, however, be emphasized that these patients were found by population-based mass-screening.…”

“…This issue has been scantily studied, but a few years ago Van Koppen and colleagues reported good adherence and improved health in a majority of screen-detected children even 10 years after diagnosis. 14 In contrast, in an earlier study by O'Leary and associated only 50% of the celiac disease patients diagnosed in childhood remained on a strict gluten-free diet after a median of 28 years' follow-up. 52 In adults, dietary lapses have been a problem particularly in asymptomatic patients, 11 whereas this was not the case in the present study.…”

“…8,9 In particular, it remains unclear how well often mildly symptomatic or apparently asymptomatic screen-detected patients adhere to the demanding and socially restrictive gluten-free diet. 6,[10][11][12][13][14][15][16][17] Although untreated celiac disease is known to predispose to severe complications and incur incremental use of health care services and medicines in symptomatic patients, 9,18,19 it is obscure whether this also applies to screen-detected individuals, especially as it is possible that they have less severe histological damage 20 and subsequently better long-term outcome. Then again, complications such as poor growth, dental enamel defects and low bone mass have been observed even in otherwise asymptomatic children with celiac disease, and these maladies may remain permanent if left untreated.…”

Childhood coeliac disease: towards an improved serological mass screening strategy

“…1 It has recently been shown that 10 years after screening and treatment, 66% of the children diagnosed with CD enjoy improved health without deterioration of their quality of life. 9 However, as most cases of childhood CD currently remain unrecognized, mass screening at an early age may be the only available tool to identify these cases.…”

Implementation of a health related quality of life questionnaire for children and adolescents with celiac disease

“…Such diet has to be followed for life and implies social restrictions and alterations that could affect a child's quality of life and impact his/her treatment compliance. [11][12][13][14][15] With the purpose of having a tool that allows to approach the difficulties in HRQoL faced by children and adolescents with CD, we have adapted and validated the CDDUX diseasespecific questionnaire according to international guidelines, which showed an adequate validity and reliability and requires little completion time: 4 minutes in average. [16][17][18][19] The objective of this research was to assess the implementation and sensitivity to change of the Argentine version of the CDDUX disease-specific questionnaire.…”