Childhood coeliac disease diagnoses in Scotland 2009-2010: the SPSU project

Abstract

Objectives To establish the incidence of childhood coeliac disease (CD) in Scotland between 1 September 2009 and 31 August 2010, to determine clinical features at presentation and reasons for diagnosis, and to identify any differences in incidence and practice between regions.

Design Prospective data collection through the Scottish Paediatric Surveillance Unit (SPSU). Strategic contacts in each tertiary gastrointestinal region (East, West and North) were emailed monthly to report new cases of CD (<16-years). A clinical questionnaire was completed for each case. Additionally, regional laboratories were asked to report the number of diagnostic antibody tests for CD performed over the year.

Setting This national study looked at the total cases within Scotland. Scotland has a population of 5.2 million, with the mid-year estimate in 2009 of 912-144 children under the age of 16.

Results 91 new cases were reported, giving an overall adjusted incidence of 10.0/100-000/year. Incidence in the East was 16.3/100-000/year, West 8.1/100-000/year and North 7.7/100-000/year. Cases diagnosed due to active screening in the East (4.6/100-000/year) were more than twice the number observed in the West (2.0/100-000/year) and North (1.3/100-000/year), as was the incidence of classic cases. The most frequent symptoms reported were abdominal pain (50/91; 54.9%), failure to thrive (29/91; 31.9%), fatigue (29/91; 31.9%), diarrhoea (27/91; 29.7%) and bloating (19/91; 20.9%). Twenty-two children (24.2%) were diagnosed due to active screening, of which 14 had associated type 1 diabetes mellitus, one Down syndrome and seven had family history. Fifty-five per cent (12/22) of the patients diagnosed through active screening were asymptomatic. Significantly more CD diagnostic antibody tests were performed per head of population in the East compared with the West (OR 1.65, 95% CI 1.57 to 1.73) and North (OR 1.81, 95% CI 1.70 to 1.92).

Conclusions Approximately double the incidence of paediatric CD was observed in the East of Scotland. Evidence of more actively screened cases diagnosed and more antibody tests performed in the region suggests a lower threshold to test. An environmental influence cannot be dismissed since more classic cases were also captured. Further research is needed to highlight the role of any exogenous factors.