Long-term health and quality-of-life consequences of mass screening for childhood celiac disease: a 10-year follow-up study

Pediatrics. 2009 Apr;123(4):e582-8. doi: 10.1542/peds.2008-2221.

Abstract

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Absorptiometry, Photon
  • Celiac Disease / complications
  • Celiac Disease / diagnosis*
  • Celiac Disease / diet therapy
  • Child, Preschool
  • Diet, Gluten-Free
  • Female
  • Follow-Up Studies
  • Growth Disorders / etiology
  • Health Status
  • Humans
  • Male
  • Mass Screening
  • Patient Compliance
  • Prospective Studies
  • Quality of Life
  • Surveys and Questionnaires