Cited by 206Inflammatory Bowel DiseaseOcular Diseases and Behçet’s SyndromeColorectal Cancer Screening and Detection

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

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Jones, Gareth-Rhys, Lyons, Mathew, Plevris, Nikolas, Jenkinson, Philip W, Bisset, Cathy, Burgess, Christopher, Din, Shahida, Fulforth, James +8 more·2019·Gut

Abstract

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.

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  • In 2008, IBD prevalence was 0.51% in Canada and 0.57% in Scotland, close to the 0.53% reported for Olmsted County in 2011.

    “In 2008, the calculated prevalence of IBD in Canada and Scotland was 0.51%70 and 0.57%69, respectively, which was similar to the 0.53% reported in Olmsted County in 2011 (ref.28).”
  • Canadian and Scottish population-based studies published in 2019 documented Compounding Prevalence, with prevalence increasing by 3% yearly in Canada and 4% yearly in Scotland during the twenty-first century.

    “Population-based epidemiological studies from Canada and Scotland published in 2019 documented the Compounding Prevalence of IBD: during the twenty-first century, prevalence rose by 3% and 4% per year in Canada and Scotland, respectively9,69.”
  • Forecasts place the 1% prevalence doubling point at 22 years for Canada (2008-2030) and 20 years for Scotland (2008-2028).

    “Forecasting models indicate that the prevalence doubling point of 1% would occur over 22 years in Canada (2008 to 2030)9 and 20 years in Scotland (2008 to 2028)69.”

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Authors
Jones, G.-R., Lyons, M., Plevris, N., Jenkinson, P. W., Bisset, C., Burgess, C., Din, S., Fulforth, J., Henderson, P., Ho, G.-T., Kirkwood, K., Noble, C., Shand, A. G., Wilson, D. C., Arnott, I. D., & Lees, C. W.
Affiliations
  • Western General Hospital (GB)
  • University of Edinburgh (GB)
Corresponding author
Jones, Gareth-Rhys
Venue
Gut
Publisher
BMJ
Published
2019-07-11
Volume
68
Issue
11
Pages
1953-1960
ISSN
  • 0017-5749 (ISSN-L)
  • 1468-3288
OpenAlex
W2958721929
Cited by
206
References
22
Citations by year
2026: 13 · 2025: 29 · 2024: 32 · 2023: 38 · 2022: 38 · 2021: 21 · 2020: 29 · 2019: 5
FWCI
14.01
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • Gut (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • HighWire Press Open Archive (submittedVersion)
  • Edinburgh Research Explorer (University of Edinburgh) (submittedVersion, cc-by)
Funders
Wellcome Trust
Topics
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Inflammatory Bowel Disease
  • Health Sciences › Medicine › Ophthalmology › Ocular Diseases and Behçet’s Syndrome
  • Health Sciences › Medicine › Oncology › Colorectal Cancer Screening and Detection
Keywords
inflammatory bowel disease, IBD prevalence, Crohn's disease, ulcerative colitis, mark-recapture, missed cases, prevalence trends, prevalence forecasting, Lothian, Scotland, ICD-10 coding, prescribing data, electronic health records, ARIMA modeling, health planning, IBD-unclassified
MeSH terms
Adolescent, Adult, Aged, Aged, 80 and over, Child, Child, Preschool, Female, Humans, Infant, Infant, Newborn, Male, Middle Aged, Registries, Scotland, Inflammatory Bowel Diseases, Incidence, Prevalence, Age Distribution, Sex Distribution, Young Adult

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