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


CONCLUSIONS
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.
van Koppen
Ellen J
EJ
Department of Paediatrics, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, Netherlands.
Schweizer
Joachim J
JJ
Csizmadia
Cassandra G D S
CG
Krom
Yvonne
Y
Hylkema
Herbertien B
HB
van Geel
Annemarie M
AM
Koopman
Hendrik M
HM
Verloove-Vanhorick
S Pauline
SP
Mearin
Maria Luisa
ML