Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening

Nordyke, Katrina; Norström, Fredrik; Lindholm, Lars; Carlsson, Annelie; Danielsson, Lars-Göran; Emmelin, Maria; Högberg, Lotta; Karlsson, Εva; Ivarsson, Anneli

doi:10.1258/jms.2011.011081

Cited by 23 publications

(25 citation statements)

References 36 publications

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“…However, when considering the QOL of screen-detected patients with CD, the current evidence is limited and conflicting. While some studies showed no differences in HRQOL (equally at diagnosis and after starting the GFD), between adolescents with screen-detected CD and their healthy controls or symptomatic CD patients [18][19][20], another UK study demonstrated that 27% of screen-detected patients completely regretted being diagnosed with CD, therefore questioning the acceptability of the treatment and screening procedures [21]. Furthermore the positive impact of the GFD on Physical Health could be related to a significantly higher energy intake in patients on GFD than controls, with no impact on body mass index [22].…”

Section: Discussionmentioning

confidence: 99%

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

Biagetti

Gesuita

Gatti

et al. 2015

Digestive and Liver Disease

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Section: Discussionmentioning

confidence: 99%

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

Biagetti

Gesuita

Gatti

et al. 2015

Digestive and Liver Disease

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“…A previous population based study from our group, found no HRQoL difference between 153 school aged children with undetected celiac disease and children without celiac disease, when investigating self-reported HRQoL by the shorter six item EQ-5D-Y HRQoL instrument [29]. In the current study we confirmed these results in an extended study group (238 12-year old children with undetected celiac disease) and by use of a more comprehensive assessment of HRQoL (full-form 52 item Kidscreen instrument).…”

Section: Discussionmentioning

confidence: 99%

“…All children were invited to provide a blood sample and alongside to fill in a questionnaire. Data collection was performed in the schools by research nurses with assistance from school health nurses and teachers [16,29]. Afterwards, blood samples were analyzed for serological markers; anti-tissue-transglutaminase antibodies of IgA-type (tTG) for all children and for some also anti-endomysial antibodies IgA (EMA), or in case of IgA-deficiency serological markers of IgG type.…”

Section: Methodsmentioning

confidence: 99%

Health-related quality of life is not impaired in children with undetected as well as diagnosed celiac disease: a large population based cross-sectional study

et al. 2014

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BackgroundKnowledge regarding the health-related quality of life (HRQoL) of children with celiac disease remains limited and inconclusive. We investigated the HRQoL of three groups of 12-year-olds with: i) undetected celiac disease ii) clinically diagnosed celiac disease, and iii) without celiac disease.MethodsA school-based cross-sectional multicenter screening study invited 18 325 children, whereof 68% consented to participate. Participants provided a blood sample, which was later analyzed for anti-tissue-tranglutaminase antibodies, and alongside filled in a questionnaire. When anti-tissue-tranglutaminase antibodies were elevated, a small intestinal biopsy verified the screening-detected celiac disease diagnosis. Self-reported HRQoL was measured using Kidscreen, a generic 52 items instrument with proven reliability and validity. Scores were linearly transformed into a 0–100 scale with higher values indicating better HRQoL. Mean values with standard deviations (mean ± SD) were compared, and uni- and multivariate logistic regression models tested the odds of a low HRQoL among children with undetected or diagnosed celiac disease, respectively.ResultsChildren with undetected celiac disease (n = 238) reported similar HRQoL as children without celiac disease (n = 12 037) (83.0 ± 11.0 vs. 82.5 ± 11.3, P = 0.51), and also similar HRQoL (82.2 ± 12.2, P = 0.28) to that of children with diagnosed celiac disease (n = 90), of whom 92% were adherent to treatment. Having undetected celiac disease did not increase the odds of low overall HRQoL, independent of sex, area of residence, study year and occurrence of gastrointestinal symptoms (adjusted odds ratio 0.77, 95% CI 0.54-1.10). Comparable results were seen for diagnosed celiac disease cases (adjusted odds ratio 1.11, 95% CI 0.67-1.85).ConclusionChildren with undetected celiac disease reported comparable HRQoL as their peers with diagnosed celiac disease, and those without celiac disease, when reporting prior to receiving the diagnosis through screening. Thus, children with celiac disease, both untreated and diagnosed, perceive their HRQoL as unimpaired by their disease.

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“…Studies involving the same children as in the current study showed that, before knowledge of CD status, the screening-detected CD children reported similar health-related quality of life as their peers. 25 One year after diagnosis, 72% strictly complied with the diet and 54% subjectively perceived improved health, but at the same time they described social sacrifices in relation to the diagnosis and treatment. 21 Nevertheless, mass screening seemed to be acceptable to most of those being diagnosed and their parents.…”

Section: Figurementioning

confidence: 99%

Usefulness of Symptoms to Screen for Celiac Disease

et al. 2014

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WHAT'S KNOWN ON THIS SUBJECT: Celiac disease (CD) often goes undiagnosed. Current guidelines suggest intensified active casefinding, with liberal testing of children with CD-associated symptoms and/or conditions. However, methods for also finding undiagnosed CD cases in the general population should be explored and evaluated.WHAT THIS STUDY ADDS: In a population-based CD screening, information on CD-associated symptoms and conditions, obtained before knowledge of CD status, was not useful in discriminating undiagnosed CD cases from non-CD children. The majority of screening-detected CD cases had no CD-associated symptoms or conditions. abstract OBJECTIVE: To describe the frequency of symptoms and associated conditions among screening-detected celiac disease (CD) cases and non-CD children and to evaluate questionnaire-based case-finding targeting the general population. METHODS:In a population-based CD screening of 12-year-olds, children and their parents completed questionnaires on CD-associated symptoms and conditions before knowledge of CD status. Questionnaire data for those who had their CD detected in the screening (n = 153) were compared with those of children with normal levels of CD markers (n = 7016). Hypothetical case-finding strategies were also evaluated. Questionnaires were returned by 7054 (98%) of the children and by 6294 (88%) of their parents.RESULTS: Symptoms were as common among screening-detected CD cases as among non-CD children. The frequency of children with screening-detected CD was similar when comparing the groups with and without any CD-related symptoms (2.1% vs 2.1%; P = .930) or CD-associated conditions (3.6% vs 2.1%; P = .07). Case-finding by asking for CD-associated symptoms and/or conditions would have identified 52 cases (38% of all cases) at a cost of analyzing blood samples for 2282 children (37%) in the study population. CONCLUSIONS:The current recommended guidelines for finding undiagnosed CD cases, so-called active case-finding, fail to identify the majority of previously undiagnosed cases if applied in the general population of Swedish 12-year-olds. Our results warrant further studies on the effectiveness of CD case-finding in the pediatric population, both at the clinical and population-based levels.

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Health-related quality-of-life in children with coeliac disease, measured prior to receiving their diagnosis through screening

Cited by 23 publications

References 36 publications

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

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

Health-related quality of life is not impaired in children with undetected as well as diagnosed celiac disease: a large population based cross-sectional study

Usefulness of Symptoms to Screen for Celiac Disease

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