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Original research
Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK
  1. Rukshana Kapasi1,
  2. Jackie Glatter1,
  3. Christopher A Lamb2,3,
  4. Austin G Acheson4,
  5. Charles Andrews5,
  6. Ian D Arnott6,
  7. Kevin J Barrett7,
  8. Graham Bell8,
  9. Guaraang Bhatnagar9,
  10. Stuart Bloom10,
  11. Matthew James Brookes11,12,
  12. Steven R Brown13,
  13. Nicola Burch14,
  14. Andy Burman15,
  15. Kay Crook16,
  16. JR Fraser Cummings17,
  17. Justin Davies18,
  18. Anne Demick19,
  19. Jenny Epstein20,
  20. Omar Faiz16,21,
  21. Roger Feakins22,23,
  22. Melissa Fletcher8,
  23. Vikki Garrick24,
  24. Bruce Jaffray3,25,
  25. Matthew Johnson26,
  26. Katie Keetarut10,
  27. Jimmy Limdi27,
  28. Uchu Meade16,28,
  29. Rafeeq Muhammed29,
  30. Andrew Murdock30,
  31. Nick Posford31,
  32. Georgina Rowse32,
  33. Ian Shaw33,
  34. Anja St Clair Jones34,
  35. Stuart Taylor10,
  36. Sean Weaver35,
  37. Lisa Younge22,
  38. Antony Barney Hawthorne36
  1. 1 Crohn's & Colitis UK, Hatfield, UK
  2. 2 Newcastle University, Newcastle upon Tyne, UK
  3. 3 Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  4. 4 Nottingham University Hospitals NHS Trust, Nottingham, UK
  5. 5 Mendip Vale Medical Practice, Yatton, UK
  6. 6 Western General Hospital, Edinburgh, UK
  7. 7 New Road Surgery, Rickmansworth, UK
  8. 8 IBD UK, Hatfield, UK
  9. 9 Frimley Health NHS Foundation Trust, Frimley, UK
  10. 10 University College London Hospitals NHS Foundation Trust, London, UK
  11. 11 Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK
  12. 12 University of Wolverhampton, Wolverhampton, UK
  13. 13 Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  14. 14 University Hospitals Coventry and Warwickshire NHS Trust, Coventry, UK
  15. 15 British Dietetic Association, Birmingham, UK
  16. 16 St Mark's Hospital, Harrow, UK
  17. 17 Southampton University NHS Trust, Southampton, UK
  18. 18 Addenbrooke's Hospital, Cambridge, Cambridgeshire, UK
  19. 19 Ileostomy & Internal Pouch Association, Essex, UK
  20. 20 Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
  21. 21 Imperial College London, London, UK
  22. 22 Barts Health NHS Trust, London, UK
  23. 23 Queen Mary University of London, London, UK
  24. 24 Royal Hospital for Children, Glasgow, UK
  25. 25 Great North Children's Hospital, Newcastle upon Tyne, UK
  26. 26 Luton and Dunstable University Hospital NHS Foundation Trust, Luton, UK
  27. 27 The Pennine Acute Hospitals NHS Trust, Manchester, UK
  28. 28 University of Hertfordshire, Hatfield, UK
  29. 29 Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK
  30. 30 Craigavon Area Hospital, Portadown, Armagh, UK
  31. 31 CICRA, Sutton, UK
  32. 32 University of Sheffield, Sheffield, UK
  33. 33 Gloucestershire Hospitals NHS Foundation Trust, Cheltenham, UK
  34. 34 Brighton and Sussex University Hospitals NHS Trust, Brighton, UK
  35. 35 Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust, Bournemouth, UK
  36. 36 University Hospital of Wales, Cardiff, UK
  1. Correspondence to Ms Rukshana Kapasi, Crohn's & Colitis UK, Hatfield, UK; rukshana.kapasi{at}


Objective Symptoms and clinical course during inflammatory bowel disease (IBD) vary among individuals. Personalised care is therefore essential to effective management, delivered by a strong patient-centred multidisciplinary team, working within a well-designed service. This study aimed to fully rewrite the UK Standards for the healthcare of adults and children with IBD, and to develop an IBD Service Benchmarking Tool to support current and future personalised care models.

Design Led by IBD UK, a national multidisciplinary alliance of patients and nominated representatives from all major stakeholders in IBD care, Standards requirements were defined by survey data collated from 689 patients and 151 healthcare professionals. Standards were drafted and refined over three rounds of modified electronic-Delphi.

Results Consensus was achieved for 59 Standards covering seven clinical domains; (1) design and delivery of the multidisciplinary IBD service; (2) prediagnostic referral pathways, protocols and timeframes; (3) holistic care of the newly diagnosed patient; (4) flare management to support patient empowerment, self-management and access to specialists where required; (5) surgery including appropriate expertise, preoperative information, psychological support and postoperative care; (6) inpatient medical care delivery (7) and ongoing long-term care in the outpatient department and primary care setting including shared care. Using these patient-centred Standards and informed by the IBD Quality Improvement Project (IBDQIP), this paper presents a national benchmarking framework.

Conclusions The Standards and Benchmarking Tool provide a framework for healthcare providers and patients to rate the quality of their service. This will recognise excellent care, and promote quality improvement, audit and service development in IBD.

  • inflammatory bowel disease
  • IBD
  • colitis
  • ulcerative colitis
  • UC
  • Crohn’s disease
  • CD
  • guideline
  • standards
  • quality improvement
  • multidisciplinary team
  • MDT
  • audit
  • cost-effectiveness
  • service development
  • pathway
  • protocol
  • patient education
  • self-management
  • benchmark
  • paediatrics
  • gastroenterology

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  • Contributors The IBD Standards Development Group was composed of IDA, KJB, SB, FC, MF, OF, JG, ABH, RK, KK, JKL, AM, RM, NP, AStCJ and LY, with additional input from BJ, UM and CAL. Alignment of e-Delphi methodology with UK medical and surgical guidelines was undertaken by CAL and ABH. The e-Delphi voters were AGA, CA, IDA, KJB, GB, GB, SB, MJB, SRB, JD, AD, JE, OF, RF, MF, ABH, BJ, MJ, KK, JL, RM, AM, NP, GR, AStCJ, IS, SAT and LY. The Benchmarking Development Group was composed of IDA, KJB, SB, OF, JG, RK, KK, RM, NP, AStCJ, IS, SAT and LY. The patient survey development has been led by Crohn’s & Colitis UK. The manuscript was written by JG, ABH, RK and CAL. All members of IBD UK as co-authors contributed to and approved the final manuscript for submission: IBD UK organisational representative members were CA, IDA, KJB, SB, SJB, GB, GB, NB, AB, KC, RC, AD, JE, OF, VG, JG, ABH, RK, KK, UM, RM, AM, NP, AStCJ, SAT, SW, LY.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

  • Data availability statement All data relevant to the study are included in the article or uploaded as supplementary information.

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