Dr Kevin Barrett and Jackie Glatter discuss how the new IBD Standards encourage a patient-centred framework for safe, consistent, high quality, personalised care

BARRETT_Kevin_Dr_cropped

Dr Kevin Barrett

GLATTER_Jackie

Jackie Glatter

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Read this article to learn more about:

  • why the IBD Standards were needed
  • how implementation of the IBD Standards will improve patient-centred care
  • the 23 statements from the 2019 IBD Standards that are particularly relevant to primary care.

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The two main types of inflammatory bowel disease (IBD) are Crohn’s disease and ulcerative colitis. IBD is a relapsing–remitting condition that causes inflammation and ulceration in the bowels, affecting approximately 500,000 people in the UK.1,2 Patients can also experience extraintestinal symptoms in the joints, skin, eyes, and liver. There is no cure and treatment is focused on achieving and maintaining remission, with potentially life-threatening complications in complex disease. IBD can have a significant impact on social functioning, affecting relationships, work, and education.3

The need for IBD Standards

In 2006, the first audit of IBD services took place, led by the Royal College of Physicians. This showed great variation in standards of care for people with IBD, highlighting that there was a need for authoritative published standards.4 The first IBD Standards were therefore created in 2009, defining what was required to provide integrated, high quality IBD services. These were updated in 2013,5 and they now underpin the 2015 NICE quality standard on IBD.6 They were also a key part of the IBD Quality Improvement Programme in the UK supported by the Royal College of Physicians up to 2015.7 While development of the IBD Standards led to significant improvements in care provision, including increased numbers of IBD nurse specialists—and supported service development—inequality and variations in care remain a reality for people with IBD in the UK.8

Formed in 2017, IBD UK had a key priority to update and build on the IBD Standards and ensure their implementation throughout the UK. This has led to the creation of the 2019 UK IBD Standards,9 which:

  • reflect developments in the care and treatment of IBD
  • support the NHS policy agenda across the UK
  • align with the 2019 British Society of Gastroenterology IBD guidelines10 and the 2018 Association of Coloproctology of Great Britain and Ireland surgical guidelines11
  • incorporate the views and needs of clinicians and people with IBD
  • serve as a driver for quality improvement.

IBD Standards 2019

The updated IBD Standards 2019 comprise 59 statements, divided into seven sections, which cover key stages of the patient journey and essential elements of an IBD service (see Figure 1).

Figure 1_Figure 1- The seven sections of the 2019 IBD Standards_O

Figure 1: The seven sections of the 2019 IBD Standards

IBD UK. IBD Standards. IBD UK, 2019. Available at: ibduk.org/ibd-standards (accessed 20 June 2019).
Reproduced with permission.

Of these statements, 23 have an impact on primary care and the relationship between primary and secondary care. Coordination of care and a more personalised and holistic approach is becoming increasingly important and will facilitate improved experiences and outcomes for patients. Accordingly, the 2019 IBD Standards put the patient at the centre, both through content and structure, and encompass the patient pathway from pre-diagnosis to treatment and ongoing care.

During the development process, it was also identified that a benchmarking tool would be valuable to support implementation of the IBD Standards. A new IBD Benchmarking Tool will enable IBD services to assess their performance against the IBD Standards and develop targeted plans for quality improvement. An IBD Patient Survey forms part of this, allowing an IBD service to compare multidisciplinary team self-assessment results with the views of its patients. Guidance and resources to support implementation are available from the IBD UK website.

This article focuses on the 23 statements that are particularly relevant to primary care (see Table 1), which fall under the sections pre-diagnosis, newly diagnosed, flare management, inpatient care, and ongoing care and monitoring.

Table 1: The 23 IBD Standards statements with particular relevance to primary care9
SectionStatement

Pre-diagnosis

2.1

Clear pathways and protocols for investigating children and adults with persistent lower gastrointestinal symptoms should be agreed between primary and secondary care and should include guidance on the use of faecal biomarker tests in primary care to aid rapid diagnosis.

2.2

Patients who are referred with suspected IBD should be seen within 4 weeks, or more rapidly if clinically necessary.

2.3

Patients presenting with acute severe colitis should be admitted to a centre with medical and surgical expertise in managing IBD that is available at all times.

2.4

All patients should be provided with a point of contact and clear information about pathways and timescales while awaiting the outcome of tests and investigations.

Newly diagnosed

3.2

After diagnosis, all patients should have full assessment of their disease, nutritional status, bone health and mental health, with baseline infection screen, in order to develop a personalised care plan.

3.3

Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account.

3.4

After diagnosis, all outpatients with IBD should be able to start a treatment plan within 48 hours for moderate to severe symptoms and within 2 weeks for mild symptoms.

3.5

Patients should be signposted to information and support from patient organisations.

3.6

GPs should be informed of new diagnoses and the care plan that has been agreed within 48 hours.

Flare management

4.1

Local treatment protocols and clear pathways should be in place for the management of IBD patients experiencing flares and include advice for primary care.

4.2

All patients with IBD should be provided with clear information to support self-management and early intervention in the case of a flare.

4.3

Rapid access to specialist advice should be available to patients to guide early flare intervention, including access to a telephone/email advice line with response by the end of the next working day.

4.4

Patients with IBD should have access to review by the IBD team within a maximum of 5 working days and be able to escalate/start a treatment plan within 48 hours of review.

4.5

Steroid treatment should be managed in accordance with guidelines and audited on an ongoing basis, with clear guidance to primary care.

Inpatient care

6.11

Clear written information about follow up care and prescribed medications should be provided before discharge from the ward and communicated to the patient’s IBD clinical team and GP within 48 hours of discharge.

Ongoing care and monitoring

7.1

A personalised care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/email advice line.

7.2

Patients should be supported in self-management, as appropriate, through referral or signposting to education, groups and support.

7.3

Clear protocols should be in place for the supply, monitoring and review of medication across primary and secondary care settings.

7.4

Pain and fatigue are common symptoms for IBD patients and should be investigated and managed using a multidisciplinary approach including pharmacological, non-pharmacological and psychological interventions where appropriate.

7.5

Any reviews and changes of treatment in primary or secondary care should be clearly recorded and communicated to all relevant parties within 48 hours.

7.6

Patients or parents/carers should be offered copies of clinical correspondence relating to their/their child’s treatment and care.

7.7

All IBD patients should be reviewed at agreed intervals by an appropriate healthcare professional and relevant disease information recorded.

7.8

A mechanism should be in place to ensure that colorectal cancer surveillance is carried out in line with national guidance and that patients and parents/carers are aware of the process.

IBD=inflammatory bowel disease

IBD UK. IBD Standards. IBD UK; 2019. Available at: ibduk.org/ibd-standards (accessed 20 June 2019).

Reproduced with permission

Pre-diagnosis

As IBD is a chronic relapsing–remitting, progressive condition, delays in diagnosis are associated with a reduced response to treatment, and an increased rate of surgical intervention.12 Clear pathways to investigate adults with lower gastrointestinal symptoms can be helpful where the patient does not present with typical symptoms and, as such, it was important to establish implementation of these within the new IBD Standards.

A supporting consensus paper for NICE diagnostics guidance (DG) 11 Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel,13 has shown that implementation of a pathway for the investigation of lower gastrointestinal symptoms in adults can lead to a 40–57% reduction in new hospital outpatient appointments and a 21–50% reduction in colonoscopies, therefore improving the time to diagnosis and reducing the number of unnecessary colonoscopies.14 Because medical and surgical specialists need to work jointly and need to manage and closely monitor acute severe colitis, patients with IBD should be admitted to a centre with appropriate expertise that is available 24 hours a day.15 Children should be referred to the nearest specialist children’s service. Figure 2 shows the York faecal calprotectin pathway,16 which supports NICE DG11.

Figure 2_NICE-endorsed pathway for the investigation of lower GI symptoms in primary care

Figure 2: NICE-endorsed pathway for the investigation of lower GI symptoms in primary care

Turvill J, Turnock D, Holmes H et al. Evaluation of the clinical and cost-effectiveness of the York Faecal Calprotectin Care Pathway. Frontline Gastroenterol 2018; 9: 285–294.
Reproduced with permission.

Newly diagnosed

Inflammatory bowel disease is a multisystem disease that affects both the bowel and extraintestinal sites. Malnutrition is common and bone health can be adversely affected. Alongside this, inflammatory changes anywhere in the body can impact on mental health, and studies have shown that the rate of depression and anxiety in patients with IBD is significantly higher than in the general population.17 Consequently, multidisciplinary working and the development of a personalised care plan based on a holistic needs assessment are key components of the IBD Standards. Many patients with IBD benefit from support from organisations such as Crohn’s & Colitis UK and access to emotional support and counselling

Flare management

In areas of the UK with good access to IBD nurse specialists, online access to specialist teams, and/or clear flare management pathways, patients and GPs can be empowered to recognise and manage flares of IBD. Many areas of the UK do not currently have such support, and there may be an association between a lack of access to IBD nurse specialists and an increased length of hospital stay for patients with IBD.18

Oral steroids have a place in the induction of remission and the management of flares of IBD; however, they do not have a role in the maintenance of remission. Patients should be referred to secondary care for consideration of escalation of their immunosuppressive medication or alternative treatment if they:19

  • are receiving more than two courses of oral corticosteroids in a year, or
  • cannot reduce the dose below 15 mg/day prednisolone (or equivalent), or
  • relapse within 6 weeks.

All prescribed courses of steroids should be recorded and communicated to secondary care.

Specific guidance and resources are available through the IBD UK website including optimal flare pathways and case studies highlighting innovation in practice.

Inpatient care

The medications used in IBD can be complex and require long-term monitoring. It is therefore important that clear communication happens rapidly between primary and secondary care. The IBD Standards set out clear expectations and timeframes to reflect this (see Table 1).

Ongoing care and monitoring

Safe, high quality care is reliant on good coordination and communication between the different healthcare professionals involved in primary, secondary, and tertiary care. Shared care protocols support the ongoing prescribing and monitoring of immunomodulatory therapies in general practice. The arrangements and scope for any shared care must be clearly defined between the hospital team, GP, and patient. These should be explained verbally to the patient, and written information should be provided that explains what arrangements have been agreed with them for their care, in language that they can understand. This should describe the roles and responsibilities of all parties and the circumstances in which the patient should be referred back to hospital care, with contact details for the IBD team so that the patient knows how to get in touch if needed.

NICE CG118 Colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn’s disease or adenomas states that the risk of developing colorectal cancer for people with ulcerative colitis is estimated as 2% after 10 years, 8% after 20 years, and 18% after 30 years of disease.20 Identifying patients at high risk can be problematic in primary care, but is important as a proportion of patients are lost to specialist follow up.

NICE CG118 recommends offering colonoscopic surveillance to people with IBD (see Box 1).20

Box 1: NICE recommendations on colonoscopic surveillance for people with inflammatory bowel disease

  • Offer colonoscopic surveillance to people with IBD whose symptoms started 10 years ago and who have:
    • ulcerative colitis (but not proctitis alone) or
    • Crohn’s colitis involving more than one segment of colon
  • Offer colonoscopic surveillance to people with IBD as defined [above] based on their risk of developing colorectal cancer (see Table 1 in NICE CG118), determined at the last complete colonoscopy:
    • low risk: offer colonoscopy at 5 years
    • intermediate risk: offer colonoscopy at 3 years
    • high risk: offer colonoscopy at 1 year.

© NICE 2011 Colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn’s disease or adenomas. Available from: www.nice.org.uk/cg118 All rights reserved. Subject to Notice of rights. NICE guidance is prepared for the National Health Service in England. All NICE guidance is subject to regular review and may be updated or withdrawn. NICE accepts no responsibility for the use of its content in this product/publication. See www.nice.org.uk/re-using-our-content/uk-open-content-licence for further details.

Summary

The 2019 IBD Standards provide a clear framework for IBD teams to provide high quality services for their patients: a defined diagnostic pathway, including the use of faecal calprotectin and/or faecal immunochemical testing in primary care; better follow-up arrangements; a personalised care plan, including flare management; and more holistic support for patients from primary and secondary care.

Dr Kevin Barrett

GP Partner at New Road Surgery

Chair of the Primary Care Society for Gastroenterology

RCGP and Crohn’s & Colitis UK Spotlight Project Lead Clinical Champion

Jackie Glatter

Health Services Programme Manager, Crohn’s & Colitis UK

Top tips for GPs

  • ­­Use a systematic approach to the investigation of patients with lower gastrointestinal symptoms and use an endorsed diagnostic pathway
  • Faecal calprotectin testing can help distinguish between patients with inflammatory conditions and those with functional gastrointestinal disorders—false positives can occur in patients with gastroenteritis or those using NSAIDs, and false negatives can occur in children and patients with microscopic colitis
  • Support the use of a patient-held flare card and care plan
  • Contact your local IBD team or IBD nurse specialist if there is one in your area
  • Signpost your patient to organisations such as Crohns and Colitis or CIRCRA 
  • Use oral steroids appropriately in IBD—let the IBD team know every time you prescribe a course
  • Reconsider a diagnosis of irritable bowel syndrome or IBD in patients whose symptoms differ from their normal pattern or whose symptoms do not respond to the normal therapies
  • Remember that the risk of colorectal carcinoma is increased in patients with IBD
  • Add a shortcut to the RCGP and Crohn’s & Colitis UK IBD Toolkit to your desktop
  • Discuss the IBD Benchmarking Tool with your colleagues in secondary care and ask them to register. NB The IBD Benchmarking Tool will be live from 1 October 2019 and will close on 15 January 2020
  • Encourage your patients to take part in the IBD Patient Survey. NB The IBD Patient Survey closes on 23 September 2019.

NSAIDs=non-steroidal anti-inflammatory drugs; IBD=inflammatory bowel disease; RCGP=Royal College of General Practitioners

Top tips for commissioners

  • Establish pathways for the investigation of patients with lower gastrointestinal symptoms, for example the pathway in NICE DG1113
  • Ensure that secondary care provides each patient with IBD with a care plan that includes their diagnosis, their current treatment, what to do in the event of a flare, who to contact for advice and support, and when their next colonoscopy is due
  • Enable the provision of faecal calprotectin testing in primary care
  • Ensure that patients with IBD are encouraged to seek psychological support from the Improving Access to Psychological Therapies programme or counselling services
  • Ask that your acute trusts add the RCGP and Crohn’s & Colitis UK IBD Toolkit to discharge summaries and outpatient letters
  • Provide for sufficient IBD nurse specialists in secondary care to effectively triage and support patients, and consider encouraging IBD nurse specialists to be based in community settings.

DG=diagnostics guidance; IBD=inflammatory bowel disease; RCGP=Royal College of General Practitioners

Implementation actions for STPs and ICSs

written by Dr David Jenner, GP, Cullompton, Devon

The following implementation actions are designed to support STPs and ICSs with the challenges involved with implementing new guidance at a system level. Our aim is to help you consider how to deliver improvements to healthcare within the available resources. 

  • Conduct a baseline review of current service provision against the 2019 IBD Standards
  • Identify any gaps in current service provision
  • Formulate business plans to mitigate these gaps if they exist
    • acquire human or financial resources necessary to implement these plans
    • build these plans into contracts with trusts and consider if extra services need to be commissioned from general practice (e.g. shared care monitoring of disease modifying drugs)
  • Agree and publish local diagnostic and referral pathways so that patients are referred promptly.

STP=sustainability and transformation partnership; ICS=integrated care system; IBD=inflammatory bowel disease

Implementation actions for clinical pharmacists in general practice

written by Gupinder Syan, Training and Clinical Outcomes Manager, Soar Beyond Ltd

The following implementation actions are designed to support clinical pharmacists in general practice with implementing the guidance at a practice level. 

  • Agree scope:
    • create searches to identify the IBD population in your area
    • consider when you will be managing patients with IBD within your scope of practice, for example:
      • annual medication reviews
      • repeat medication and discharge medicines reconciliation
      • quality improvement/audit projects
      • high-risk drug monitoring and shared care adherence
  • Identify who currently manages patients with IBD and understand the process for review. Discuss and determine how your skillset and scope fits in, so that you can add value, and improve quality, processes, and joint working without duplicating work
  • Prepare in advance to ensure you have the relevant knowledge to carry out patient reviews. Update your knowledge on:
    • relevant national guidelines and other resources (e.g. BSG consensus guidelines, NICE Guideline 129, NICE Guideline 130, RCGP and Crohn’s & Colitis UK Inflammatory bowel disease toolkit)
    • holistic management of IBD (e.g. patient counselling, signposting to relevant organisations)
    • shared care guidelines, ensuring effective high-risk drug monitoring protocols are in place
    • appropriate steroid use for flares and procedures for informing secondary care
    • local referral pathways:
      • to IBD nurse specialist/GPwSIs for flare management
      • to secondary care
      • for colonoscopic surveillance
  • Deliver clinic:
    • individualise treatment and lifestyle advice to ensure patient-centred care
    • screen for depression and anxiety
    • encourage patients to complete the IBD patient survey
    • promote use of patient-held flare cards
    • develop a personalised care plan with the patient
  • Evaluate outcomes to assess how you added value or improved clinical outcomes (e.g. improved high-risk drug monitoring process in the practice).

IBD=inflammatory bowel disease; BSG=British Society of Gastroenterology; RCGP=Royal College of General Practitioners

References

  1. Hamilton B, Heerasing N, Hendy P et al. Prevalence and phenotype of IBD across primary and secondary care: implications for colorectal cancer surveillance. Gut 2018; 67: A67.
  2. Jones G-R, Lyons M, Plevris N et al. Multi-parameter datasets are required to identify the true prevalence of IBD: The Lothian IBD Registry (LIBDR). J Crohns Colitis 2019; 13: S082–S083.
  3. Lönnfors S, Vermeireb S, Grecoa M et al. IBD and health-related quality of life—discovering the true impact. J Crohn’s Colitis 2014; 8: 1281–1286.
  4. UK Inflammatory Bowel Disease Audit Steering Group, 2008, audit round one 2006–08. Available at: www.rcplondon.ac.uk/projects/outputs/ibd-audit-round-one-2006-08 (accessed 18 June 2019).
  5. The IBD Standards Group. Standards for the healthcare of people who have inflammatory bowel disease (IBD). IBD Standards 2013 update. Available at: s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf (accessed 18 June 2019).
  6. NICE. Inflammatory bowel disease. Quality Standard 81. NICE, 2015. Available at: www.nice.org.uk/qs81
  7. Arnott I, Murray S. IBD audit programme 2005–2017: review of events, impact and critical reflections. Royal College of Physicians, 2018. Available at: ibdregistry.org.uk/wp-content/uploads/2018/02/IBD-audit-programme-2005%E2%80%932017.pdf (accessed 18 June 2019).
  8. Royal College of Physicians. IBD organisational audit. Adult report—round four 2014. Healthcare Quality Improvement Partnership. Available at: www.rcplondon.ac.uk/projects/ibd-organisational-audit (accessed 18 June 2019).
  9. IBD UK. IBD Standards. IBD UK, 2019. Available at: ibduk.org/ibd-standards (accessed 20 June 2019).
  10. Lamb C, Kennedy N, Raine T et al. British Society of Gastroenterology consensus guidelines on the management of inflammatory bowel disease in adults. Gut accepted June 2019, in preparation. DOI: 10.1136/gutjnl-2019-318484. Accepted manuscript available at: www.bsg.org.uk/resource/bsg-consensus-guidelines-ibd-in-adults.html
  11. Brown S, Fearnhead N, Faiz O et al, ACPGBI IBD Surgery Consensus Collaboration. The Association of Coloproctology of Great Britain and Ireland consensus guidelines in surgery for inflammatory bowel disease. Colorectal Disease 2018; 20 (suppl 8): S3–S117.
  12. Schoepfer A, Dehlavi M, Fournier N et al; IBD Cohort Study Group. Diagnostic delay in Crohn’s disease is associated with a complicated disease course and increased operation rate. Am J Gastroenterol 2013; 108: 1744–1753.
  13. NICE. Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel. Diagnostics guidance 11. NICE, 2013. Available at: www.nice.org.uk/dg11
  14. Myers M et al; Chief Scientific Officer’s Faecal Calprotectin Working Group. Faecal calprotectin in primary care as a decision diagnostic for inflammatory bowel disease and irritable bowel syndrome. Endorsed by NHS England. www.nice.org.uk/guidance/dg11/resources/endorsed-resource-consensus-paper-pdf-4595859614 (accessed 20 June 2019).
  15. Magro F, Gionchetti P, Eliakim R et al, for the European Crohn’s and Colitis Organisation (ECCO). Third European evidence-based consensus on diagnosis and management of ulcerative colitis. Part 1: Definitions, diagnosis, extra-intestinal manifestations, pregnancy, cancer surveillance, surgery, and ileo-anal pouch disorders. J Crohns Colitis 2017; 11: 649–670.
  16. Turvill J, Turnock D, Holmes H et al. Evaluation of the clinical and cost-effectiveness of the York Faecal Calprotectin Care PathwayFrontline Gastroenterol 2018; 9: 285–294.
  17. Bernstein C, Hitchon C, Walld R et al. Increased burden of psychiatric disorders in inflammatory bowel disease. Inflamm Bowel Dis 2019; 25 (2): 360–368.
  18. Nightingale A, Middleton W, Middleton S, Hunter J. Evaluation of the effectiveness of a specialist nurse in the management of inflammatory bowel disease (IBD). Eur J Gastroenterol Hepatol 2000; 12 (9): 967–973.
  19. Barrett K, Saxena S, Pollok R. Using corticosteroids appropriately in inflammatory bowel disease: a guide for primary care. Br J Gen Pract 2018; 68 (675): 497–498.
  20. NICE. Colorectal cancer prevention: colonoscopic surveillance in adults with ulcerative colitis, Crohn’s disease or adenomas. Clinical Guideline 118. NICE, 2011. Available at: www.nice.org.uk/cg118