IBD prevalence in Lothian, Scotland, derived by capture-recapture methodology.

IBD prevalence is estimated to be rising, but no detailed, recent UK data are available. The last reported prevalence estimate in the UK was 0.40% in 2003. We aimed to establish the current, and project future, prevalence in Lothian, Scotland. We conducted an all-age multiparameter search strategy using inpatient IBD international classification of disease (ICD-10) coding (K50/51)(1997-2018), IBD pathology coding (1990-2018), primary and secondary care prescribing data (2009-2018) and a paediatric registry, (1997-2018) to identify 'possible' IBD cases up to 31/08/2018. Diagnoses were manually confirmed through electronic health record review as per Lennard-Jones/Porto criteria. Autoregressive integrated moving average (ARIMA) regression was applied to forecast prevalence to 01/08/2028. In total, 24 601 possible IBD cases were identified of which 10 499 were true positives. The point prevalence for IBD in Lothian on 31/08/2018 was 784/100 000 (UC 432/100 000, Crohn's disease 284/100 000 and IBD unclassified (IBDU) 68/100 000). Capture-recapture methods identified an additional 427 'missed' cases (95% CI 383 to 477) resulting in a 'true' prevalence of 832/100 000 (95% CI 827 to 837).Prevalence increased by 4.3% per year between 2008 and 2018 (95% CI +3.7 to +4.9%, p<0.0001). ARIMA modelling projected a point prevalence on 01/08/2028 of 1.02% (95% CI 0.97% to 1.07%) that will affect an estimated 1.53% (95% CI 1.37% to 1.69%) of those >80 years of age. We report a rigorously validated IBD cohort with all-age point prevalence on 31/08/2018 of 1 in 125, one of the highest worldwide.

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© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.

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Competing interests: NP has received consultancy fees from Takeda and speaker fees and travel support from AbbVie, Takeda and Norgine. SD has received travel support from AbbVie, Dr Falk and consultancy fees from Takeda. AGS has received travel support from AbbVie and Ferring. IA has received consultancy fees from Vifor and travel support from Takeda and Dr Falk. CWL 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. GRJ, PWJ, ML, JF and GTH have no personal interests to declare. PH and SD are supported by an NHS Research Scotland Career Researcher Fellowship. DCW has received consultancy fees, speaker fees and/or travel support from Abbvie, Takeda, Roche, Ferring, Predictimmune, Dr Falk and 4D Pharma.