Paediatric Patients (Less Than Age of 17 Years) Account for Less Than 1.5% of All Prevalent Inflammatory Bowel Disease Cases
The members of the Lothian IBD registry group are as follows: Gareth-Rhys Jones; Mathew Lyons; Nikolas Plevris; Philip W Jenkinson; Cathy Bisset; Christopher J Burgess; Shahida Din; James Fulforth; Paul Henderson; Gwo-Tzer Ho; Kathryn Kirkwood; Colin Noble; Alan G Shand; David C Wilson; Ian DR Arnott; Charlie W Lees.
Drs Christopher J. Burgess, Paul Henderson, Gareth-Rhys Jones are joint first authors.
Drs Charlie W. Lees and David C. Wilson are joint senior authors.
C.J.B. was supported by an Edinburgh Children's Hospital Charity Research Fellowship and by funding from Crohn's and Colitis UK (Edinburgh Network). G.R.J. is funded by the Wellcome Trust (Edinburgh clinical academic training programme; 100469/Z/12/Z) and University of Edinburgh Institutional Strategic Support Fund. P.H. is supported by an NHS Research Scotland Career Researcher Fellowship.
D.C.W. has received consultancy fees, speaker fees, and/or travel support from Abbvie, Nestle Health Sciences, Roche, Ferring and Predictimmune. C.W.L. has received research support from Gilead, Oshi Health, and AbbVie, consultancy fees from AbbVie, Pfizer, Dr Falk, Hospira, MSD, Gilead, Pharmacosmos, Takeda, and Vifor, and speaker fees and travel support from AbbVie, Pfizer, Ferring, Hospira, and Takeda. N.P. has received consultancy fees from Takeda and speaker fees and travel support from AbbVie, Takeda, and Norgine. S.D. has received travel support from AbbVie, Dr Falk, and consultancy fees from Takeda. A.G.S. has received travel support from AbbVie and Ferring. I.A. has received consultancy fees from Vifor and travel support from Takeda and Dr Falk.
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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 August 31, 2018 within Lothian, a defined health board and the largest of the 3 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 7035 confirmed point-prevalent patients, 560 were classified as A1 age phenotype at diagnosis, constituting just 8% of all cases. Ninety-nine patients were less than 17 years of age on August 31, 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.