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Burden of Illness in Screen-detected Children With Celiac Disease and Their Families

Kinos, Sampsa*; Kurppa, Kalle; Ukkola, Anniina; Collin, Pekka*,‡; Lähdeaho, Marja-Leena; Huhtala, Heini§; Kekkonen, Leila||; Mäki, Markku; Kaukinen, Katri*,‡

Journal of Pediatric Gastroenterology & Nutrition: October 2012 - Volume 55 - Issue 4 - p 412–416
doi: 10.1097/MPG.0b013e31825f18ff
Gastroenterology

Objectives: Because of a variable clinical picture, most children with celiac disease remain unrecognized without active serologic screening. Because, however, many patients are asymptomatic, the justification for screening remains unclear. We assessed health and well-being and the effect of a 1-year gluten-free diet in a nationwide cohort of children with celiac disease detected by screening in at-risk groups.

Methods: A total of 222 newly detected children received a validated questionnaire covering aspects of the burden caused by the undiagnosed celiac disease. After 1 year, adherence to the diet and difficulties attending this, attitudes toward and effects of disease and diet on daily life, and parents’ satisfaction with the diagnosis were inquired about. The children's health and parents’ concern for it were asked about at diagnosis and on treatment. The outcomes of screen-detected children were compared with those of children diagnosed on the basis of clinical symptoms.

Results: Forty-three screen-detected and 88 symptom-detected children responded. Also, 65% of the screen-detected patients experienced symptoms; these, however, being less troublesome and of shorter duration than in symptom-detected subjects. There were no differences between the groups in dietary adherence (71% vs 84% strict diet), management of the diet (80% vs 80%), alleviation of symptoms (78% vs 86%), and improvement in daily life (73% vs 69%), or in satisfaction with the diagnosis (93% vs 88%). Improved health and reduced parental concern were observed in both groups.

Conclusions: Screen-detected children with celiac disease can attain satisfactory dietary adherence and benefit from treatment similarly to symptom-detected patients. The results support intensified screening for celiac disease in at-risk children.

*School of Medicine, University of Tampere, Tampere, Finland

Pediatric Research Centre, University of Tampere and Tampere University Hospital, Tampere, Finland

Department of Gastroenterology and Alimentary Tract Surgery, Tampere University Hospital, Tampere, Finland

§Tampere School of Health Sciences, University of Tampere, Tampere, Finland

||Finnish Celiac Society, Tampere, Finland.

Address correspondence and reprint requests to Katri Kaukinen, MD, PhD, University of Tampere, School of Medicine, FIN-33014 Tampere, Finland (e-mail: katri.kaukinen@uta.fi).

Received 3 February, 2012

Accepted 8 March, 2012

The Celiac Disease Study Group and the present study are supported by the Academy of Finland Research Council for Health, the Competitive Research Funding of the Pirkanmaa Hospital District, the Ehrnrooth Foundation, the Foundation for Pediatric Research, Maud Kuistila Foundation, and the Sigrid Juselius Foundation. The study sponsors had no role in the study design or collection, analysis and interpretation of the data, writing of the article, or the decision to submit the manuscript for publication.

www.clinicaltrials.gov registration no. NCT01145287.

The authors report no conflicts of interest.

Copyright 2012 by ESPGHAN and NASPGHAN