IBD prevalence in Lothian, Scotland, derived by capture–recapture methodology

Gareth-Rhys Jones, Mathew Lyons, Nikolas Plevris, Philip W Jenkinson, Cathy Bisset, Christopher 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

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

OBJECTIVE: 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.

DESIGN: 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.

RESULTS: 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.

CONCLUSIONS: 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.
Original languageEnglish
Pages (from-to)1953-1960
Number of pages8
Issue number11
Early online date11 Jul 2019
Publication statusPublished - Nov 2019


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