Published online March 30, 2009
PEDIATRICS Vol. 123 No. 4 April 2009, pp. e582-e588 (doi:10.1542/peds.2008-2221)

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ARTICLE

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

Ellen J. van Koppen, MSc^a, Joachim J. Schweizer, MD, PhD^a,b, Cassandra G.D.S. Csizmadia, MD, PhD^a, Yvonne Krom, MD^a, Herbertien B. Hylkema, MD^a, Annemarie M. van Geel, MD^a, Hendrik M. Koopman, PhD^c, S. Pauline Verloove-Vanhorick, MD, PhD^d and Maria Luisa Mearin, MD, PhD^a,b

^a Departments of ^aPaediatric Gastroenterology
^c Medical Psychology, Leiden University Medical Center, Leiden, Netherlands
^b Department of Paediatric Gastroenterology, Free University Medical Centre Amsterdam, Netherlands
^d TNO Prevention and Health, Leiden, Netherlands

OBJECTIVE. Mass screening for celiac disease is controversial. The objective of this study was to determine whether detection of childhood celiac disease by mass screening improves long-term health status and health-related quality of life.

METHODS. We conducted a prospective 10-year follow-up study of 32 children who were aged 2 to 4 years, had celiac disease identified by mass screening, and had a gluten-free diet (19) or a normal gluten-containing diet (13). The follow-up included assessments of general health status, celiac disease–associated symptoms, celiac disease–associated serum antibodies, and health-related quality of life.

RESULTS. Ten years after mass screening, 81% of the children were adhering to a gluten-free diet. The health status improved in 66% of the treated children: in 41% by early treatment and in 25% by prevention of the gluten-dependent symptoms that they developed after diagnosis. For 19% of the children, treatment after screening would not have improved their health status, because they had no symptoms at screening and have remained symptom-free while consuming gluten. The health-related quality of life of the children with symptoms improved significantly after 1 year of gluten-free diet. Ten years after screening, the health-related quality of life of the children with celiac disease was similar to that of the reference population.

CONCLUSION. 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.

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Key Words: celiac disease • follow-up studies • health status • quality of life • screening

Abbreviations: CD—celiac disease • IgA—immunoglobulin A • EMA—endomysium • tTGA—human tissue transglutaminase • HRQoL—health-related quality of life • GFD—gluten-free diet • DXA—dual-energy radiograph absorptiometry

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Accepted Dec 16, 2008.

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