Inflammatory bowel disease in under 20 year olds

Lead investigator

Prof B Sandhu

About the study

Around 1999, the incidence of ulcerative colitis (UC) appeared static or falling; some reports suggested there has been an increase in the incidence of Crohn’s disease (CD) in industrialised countries. If these were confirmed, these findings may have been consistent with an environmental trigger. However, epidemiological studies to assess environmental factors that may affect susceptible individuals were difficult to undertake because of the small numbers of affected children attending single centres. Equally, conflicting reports on aetiology highlighted the need for data on disease incidence and clinical cause.

Paediatric inflammatory bowel disease (IBD) was considered to present several additional clinical problems than those seen in adult disease. These include delay in diagnosis, growth failure in more aggressive disease and a higher potential for malignant change. The delay in diagnosis, in part, likely reflected the lack of specificity in presenting symptomatology and may have prevented the initiation of effective therapy. However, many of these impressions were based on occasional reports from specialist centres.

Some retrospective data related to this were available from Scotland and Wales, but none from England. There had been no previous prospective studies to document clinical patterns and disease prevalence in the UK; therefore, the incidence of inflammatory bowel disease in childhood in the UK was unknown.

The incidence of inflammatory bowel disease was thought to rise rapidly in the teenage years. Since an apparent increase in incidence could be the result of earlier diagnosis (shortening of time between symptom onset and diagnosis), it was important to have reliable data throughout the 16-19 year age group, some of whom may present to a paediatrician and others to an adult gastroenterologist.

This study was carried out in collaboration with the newly formed British Society of Gastroenterology Research Unit. This collaboration (including raising the reporting age to 20 years) would ensure optimal reporting of adolescent cases. A prospective UK study on IBD was also needed to plan appropriate care facilities, devise an effective treatment strategy and direct research into this chronic disease. Furthermore, to properly undertake future epidemiological studies on IBD, particularly to investigate environmental factors, incidence data were required.

The study wished to identify:

• The annual incidence of inflammatory bowel disease (including Crohn’s disease, ulcerative colitis or intermediate colitis) presenting in childhood/adolescence (under 20 years of age).
• The average period between the onset of the first symptoms and presentation to a GP (or other doctor) to diagnosis.
• The site and extent of the disease process at the time of diagnosis.
• The basis for the diagnosis and the treatment given to the
• child.

Duration

June 1998 – June 1999

Published papers

Sawczenko A, Sandhu BK, Logan RF, Jenkins H, Taylor CJ, Mian S, Lynn R. Prospective survey of childhood inflammatory bowel disease in the British Isles. Lancet. 2001 Apr 7;357(9262):1093-4. doi: 10.1016/s0140-6736(00)04309-9. PMID: 11297962.

BPSU 14th Annual report 1999-2000

Support Group

Crohn’s and Colitis UK
Web: https://www.crohnsandcolitis.org.uk