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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. 1Crohn's & Colitis UK, Hatfield, UK
  2. 2Newcastle University, Newcastle upon Tyne, UK
  3. 3Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
  4. 4Nottingham University Hospitals NHS Trust, Nottingham, UK
  5. 5Mendip Vale Medical Practice, Yatton, UK
  6. 6Western General Hospital, Edinburgh, UK
  7. 7New Road Surgery, Rickmansworth, UK
  8. 8IBD UK, Hatfield, UK
  9. 9Frimley Health NHS Foundation Trust, Frimley, UK
  10. 10University College London Hospitals NHS Foundation Trust, London, UK
  11. 11Royal Wolverhampton Hospitals NHS Trust, Wolverhampton, UK
  12. 12University of Wolverhampton, Wolverhampton, UK
  13. 13Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, UK
  14. 14University Hospitals Coventry and Warwickshire NHS Trust, Coventry, UK
  15. 15British Dietetic Association, Birmingham, UK
  16. 16St Mark's Hospital, Harrow, UK
  17. 17Southampton University NHS Trust, Southampton, UK
  18. 18Addenbrooke's Hospital, Cambridge, Cambridgeshire, UK
  19. 19Ileostomy & Internal Pouch Association, Essex, UK
  20. 20Chelsea and Westminster Hospital NHS Foundation Trust, London, UK
  21. 21Imperial College London, London, UK
  22. 22Barts Health NHS Trust, London, UK
  23. 23Queen Mary University of London, London, UK
  24. 24Royal Hospital for Children, Glasgow, UK
  25. 25Great North Children's Hospital, Newcastle upon Tyne, UK
  26. 26Luton and Dunstable University Hospital NHS Foundation Trust, Luton, UK
  27. 27The Pennine Acute Hospitals NHS Trust, Manchester, UK
  28. 28University of Hertfordshire, Hatfield, UK
  29. 29Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK
  30. 30Craigavon Area Hospital, Portadown, Armagh, UK
  31. 31CICRA, Sutton, UK
  32. 32University of Sheffield, Sheffield, UK
  33. 33Gloucestershire Hospitals NHS Foundation Trust, Cheltenham, UK
  34. 34Brighton and Sussex University Hospitals NHS Trust, Brighton, UK
  35. 35Royal Bournemouth and Christchurch Hospitals NHS Foundation Trust, Bournemouth, UK
  36. 36University Hospital of Wales, Cardiff, UK
  1. Correspondence to Ms Rukshana Kapasi, Crohn's & Colitis UK, Hatfield, UK; rukshana.kapasi{at}crohnsandcolitis.org.uk

Abstract

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

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Twitter @IBDUKTEAM

  • 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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