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IBD prevalence in Lothian, Scotland, derived by capture–recapture methodology
  1. Gareth-Rhys Jones1,2,
  2. Mathew Lyons2,
  3. Nikolas Plevris2,
  4. Philip W Jenkinson2,
  5. Cathy Bisset2,
  6. Christopher Burgess3,4,
  7. Shahida Din2,
  8. James Fulforth2,
  9. Paul Henderson3,4,
  10. Gwo-Tzer Ho1,2,
  11. Kathryn Kirkwood5,
  12. Colin Noble2,
  13. Alan G Shand2,
  14. David C Wilson3,4,
  15. Ian DR Arnott2,
  16. Charlie W Lees2
  1. 1Centre for Inflammation Research, The Queen’s Medical Research Institute, University of Edinburgh, Edinburgh, UK
  2. 2Edinburgh IBD Unit, Western General Hospital, Royal Victoria Building, Edinburgh, UK
  3. 3Child Life and Health, University of Edinburgh, Edinburgh, UK
  4. 4Department of Paediatric Gastroenterology and Nutrition, Royal Hospital for Children and Young People, Edinburgh, UK
  5. 5Histopathology Unit, Western General Hospital, Royal Victoria Building, Edinburgh, UK
  1. Correspondence to Dr Gareth-Rhys Jones, The University of Edinburgh Centre for Inflammation Research, Edinburgh EH16 4TJ, UK; gareth.jones{at}


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.

  • epidemiology
  • inflammatory bowel disease
  • Crohn’s disease
  • ulcerative colitis

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  • Contributors All authors participated in the study design and data acquisition, have critically reviewed the manuscript for content and approved the final version for publication. GRJ and ML had full access to the data in the study and take full responsibility for its veracity. GRJ and ML analysed and interpreted the data. GRJ drafted the manuscript. CWL supervised the study.

  • Funding GRJ is funded by the Wellcome Trust (Edinburgh clinical academic training programme; 100469/Z/12/Z) and University of Edinburgh Institutional Strategic Support Fund. CB was supported by an Edinburgh Children’s Hospital Charity Research Fellowship. The paediatric IBD programme was supported by the Edinburgh Children’s Hospital Charity and Crohn’s and Colitis UK (Edinburgh Network).

  • 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.

  • Ethics approval The project was performed under the auspices of service assessment, and was approved by the local Caldicott Guardian (Project ID: CRD18002, registered NHS Lothian information asset #IAR-954) as part of service assessment.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Patient consent for publication Not required.