J Pediatr Gastroenterol Nutr. 2020 Jul 6. doi: 10.1097/MPG.0000000000002842.Online ahead of print.

Christopher J Burgess ¹, Paul Henderson ¹, Gareth-Rhys Jones ², Charlie W Lees ³, David C Wilson ¹, Lothian IBD registry group

Author information

• ¹Child Life and Health, University of Edinburgh, Edinburgh, UK, Department of Paediatric Gastroenterology and Nutrition, Royal Hospital for Sick Children, Edinburgh, UK.
• ²Centre for Inflammation Research, The Queen's Medical Research Institute, University of Edinburgh, Edinburgh UK, Edinburgh IBD Unit, Western General Hospital, Edinburgh, UK.
• ³Edinburgh IBD Unit, Western General Hospital, Edinburgh, UK.

Abstract

The prevalence of inflammatory bowel disease (IBD) continues to rise globally, however the true proportion of paediatric IBD patients remains unknown. We conducted an all-age, multiparameter, population-based search using capture-recapture methodology to identify all IBD cases to 31/08/2018 within Lothian, a defined health board and the largest of three within South-East Scotland. Individual case note validation was performed for all 24,601 possible IBD cases according to internationally recognised diagnostic and age criteria. Of 7,035 confirmed point-prevalent patients, 560 were classified as A1 age phenotype at diagnosis, constituting just 8.0% of all cases. 99 patients were less than 17 years of age on 31/08/2018, constituting only 1.4% of all point-prevalent cases. These results demonstrate the true contemporary proportion of prevalent paediatric IBD patients is strikingly low, reflecting compounding prevalence in adult practice and the near-normal life expectancy of this chronic, incurable condition.