Crohn’s disease

Short Text

Management of Crohn's disease in adults, children and young people

Introduction

This pathway covers the management of Crohn's disease in adults, children and young people.
Crohn's disease is a chronic inflammatory disease that mainly affects the gastrointestinal tract. There are currently at least 115,000 people in the UK with Crohn's disease. The causes of Crohn's disease are widely debated. Smoking and genetic predisposition are two important factors that are likely to play a role.
Typically people with Crohn's disease have recurrent attacks, with acute exacerbations interspersed with periods of remission or less active disease. Whether a relapse refers to a recurrence of symptoms or the appearance of mucosal abnormalities before the development of symptoms, remains the subject of dispute. Treatment is largely directed at symptom relief rather than cure, and active treatment of acute disease (inducing remission) should be distinguished from preventing relapse (maintaining remission).
Management options for Crohn's disease include drug therapy, attention to nutrition, smoking cessation and, in severe or chronic active disease, surgery.
The aims of drug treatment are to reduce symptoms and maintain or improve quality of life, while minimising toxicity related to drugs over both the short- and long-term. Glucocorticosteroid treatment, 5-ASA treatment, antibiotics, immunosuppressives and TNF-a inhibitors are currently considered to be options for treating Crohn's disease. Enteral nutrition has also been used widely as first-line therapy in children and young people to facilitate growth and development but its use in adults is less common. Between 50 and 80% of people with Crohn's disease will eventually need surgery for strictures causing symptoms of obstruction, other complications such as fistula formation, perforation or failure of medical therapy.

Considerations specific to children and young people

Up to a third of patients with Crohn's disease are diagnosed before the age of 21 but there is a lack of studies on treatment for children and young people. Paediatric practice is often based on extrapolation from adult studies and in this pathway all recommendations relate to adults, children and young people unless otherwise specified. Inducing and maintaining remission as well as optimising nutritional status and growth, and minimising psychological concerns and possible side effects of treatment are fundamental to best practice for all people with Crohn's disease, whatever their age.

Use of drugs

The recommendations in this pathway assume that prescribers will use a drug's summary of product characteristics to inform decisions made with individual patients. As the recommendations cover children, but the summaries of product characteristics for many drugs do not include children, the guidance assumes that prescribers will consult the current online version of the British national formulary for children.
This pathway recommends some drugs for indications for which they do not have a UK marketing authorisation at the date of publication, if there is good evidence to support that use. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the GMC's Good practice in prescribing medicines – guidance for doctors for further information. Where recommendations have been made for the use of drugs outside their licensed indications ('off-label use'), these drugs are marked with a footnote in the recommendations.

Source guidance

The NICE guidance that was used to create the pathway.
Crohn's disease. NICE clinical guideline 152 (2012)

Quality standards

Quality statements

Effective interventions library

Successful effective interventions library details

Implementation

Commissioning

These resources include support for commissioners to plan for costs and savings of guidance implementation and meeting quality standards where they apply.
These resources will help to inform discussions with providers about the development of services and may include measurement and action planning tools.

Education and learning

NICE produces resources for individual practitioners, teams and those with a role in education to help improve and assess users' knowledge of relevant NICE guidance and its application in practice.

Service improvement and audit

These resources provide help with planning ahead for NICE guidance, understanding where you are now, and conducting improvement initiatives.

Pathway information

Information for the public

NICE produces information for the public that summarises, in plain English, the recommendations that NICE makes to healthcare and other professionals.
NICE has written information for the public explaining its guidance on each of the following topics.

Patient-centred care

Patients and healthcare professionals have rights and responsibilities as set out in the NHS Constitution for England – all NICE guidance is written to reflect these. Treatment and care should take into account individual needs and preferences. People should have the opportunity to make informed decisions about their care and treatment, in partnership with their healthcare professionals. If the person is under 16, their family or carers should also be given information and support to help the child or young person to make decisions about their treatment. Healthcare professionals should follow the Department of Health's advice on consent. If someone does not have capacity to make decisions, healthcare professionals should follow the code of practice that accompanies the Mental Capacity Act and the supplementary code of practice on deprivation of liberty safeguards.
For young people moving between paediatric and adult services, care should be planned and managed according to the best practice guidance described in the Department of Health’s Transition: getting it right for young people.
Adult and paediatric healthcare teams should work jointly to provide assessment and services to young people. Diagnosis and management should be reviewed throughout the transition process, and there should be clarity about who is the lead clinician to ensure continuity of care.

Updates to this pathway

2 January 2014 Minor maintenance updates
15 April 2013 Minor maintenance updates
8 January 2013 Minor maintenance updates

Supporting information

Glossary

5-aminosalicylate
tumour necrosis factor
thiopurine methyltransferase

Person with suspected Crohn's disease

Person with suspected Crohn's disease

Information and multidisciplinary support

Information and multidisciplinary support

Information and multidisciplinary support

Ensure that information and advice about Crohn's disease:
  • is age appropriate
  • is of the appropriate cognitive and literacy level, and
  • meets the cultural and linguistic needs of the local community.
Discuss treatment options and monitoring with the person with Crohn's disease, and/or their parent or carer if appropriate, and within the multidisciplinary team. Apply the principles outlined in the pathway on patient experience in adult NHS services.
Discuss the possible nature, frequency and severity of side effects of drug treatment with people with Crohn's disease, and/or their parents or carers if appropriate. Appendices L and M of the full guideline on Crohn's disease contain observational data on adverse events associated with 5-ASA treatment and immunosuppressives.
Give all people with Crohn's disease, and/or their parents or carers if appropriate, information, advice and support in line with NICE guidance on:
Give people with Crohn's disease, and/or their parents or carers if appropriate, additional information on the following when appropriate:
  • possible delay of growth and puberty in children and young people
  • diet and nutrition
  • fertility and sexual relationships
  • prognosis
  • side effects of their treatment
  • cancer risk
  • surgery
  • care of young people in transition between paediatric and adult services
  • contact details for support groups.
Offer adults children and young people, and/or their parents or carers, age-appropriate multidisciplinary support to deal with any concerns about the disease and its treatment, including concerns about body image, living with a chronic illness, and attending school and higher education.

Conception and pregnancy

Give information about the possible effects of Crohn's disease on pregnancy, including the potential risks and benefits of medical treatment and the possible effects of Crohn's disease on fertility.
Ensure effective communication and information-sharing across specialties (for example, primary care, obstetrics and gastroenterology) in the care of pregnant women with Crohn's disease.

Source guidance

Monitoring

Monitoring

Monitoring

Monitoring the effects of drug treatment

Monitor the effects of azathioprine, mercaptopurine and methotrexateAlthough use is common in UK clinical practice, at the time of publication (October 2012) azathioprine, mercaptopurine and methotrexate did not have UK marketing authorisation for this indication. The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the GMC's Good practice in prescribing medicines – guidance for doctors for further information. as advised in the current online version of the 'British national formulary' (BNF) or 'British national formulary for children' (BNFC) (the gastroenterology chapter and other relevant sections should be consulted). Monitor for neutropenia in those taking azathioprine or mercaptopurine even if they have normal TPMT activity.
Ensure that there are documented local safety monitoring policies and procedures (including audit) for adults, children and young people receiving treatment that needs monitoring. Nominate a member of staff to act on abnormal results and communicate with GPs and people with Crohn's disease and/or their parents or carers, if appropriate.

Monitoring for osteopenia

See the pathway on osteoporosis for recommendations on assessing the risk of fragility fracture in adults. Crohn's disease is a cause of secondary osteoporosis.
Do not routinely monitor for changes in bone mineral density in children and young people.
Consider monitoring for changes in bone mineral density in children and young people with risk factors, such as low body mass index (BMI), low trauma fracture or continued or repeated glucocorticosteroid use.

Colonoscopic surveillance

Offer colonoscopic surveillance in line with recommendations in the pathway on colonoscopic surveillance.

Source guidance

Managing complications (strictures)

Managing complications (strictures)

Managing complications (strictures)

Consider balloon dilation particularly in people with a single stricture that is short, straight and accessible by colonoscopy.
Discuss the benefits and risks of balloon dilation and surgical interventions for managing strictures with:
  • the person with Crohn's disease and/or their parent or carer if appropriate and
  • a surgeon and
  • a gastroenterologist.
Appendix O of the full guideline on Crohn's disease contains observational data on efficacy, safety, quality of life and time to recurrence for balloon dilation and surgery for stricture.
Take into account the following factors when assessing options for managing a stricture:
  • whether medical treatment has been optimised
  • number and extent of previous resections
  • rapidity of past recurrence (if appropriate)
  • potential for further resections
  • the consequence of short bowel syndrome
  • the person's preference, and how their lifestyle and cultural background might affect management.
Ensure that abdominal surgery is available for managing complications or failure of balloon dilation.

Source guidance

Faecal calprotectin testing

Faecal calprotectin testing

Faecal calprotectin testing

Faecal calprotectin testing is recommended as an option to support clinicians with the differential diagnosis of inflammatory bowel disease (IBD) or irritable bowel syndrome (IBS) in adults with recent onset lower gastrointestinal symptoms for whom specialist assessment is being considered, if:
  • cancer is not suspected, having considered the risk factors (for example, age) described in referral guidelines for suspected cancer (NICE clinical guideline 27), and
  • appropriate quality assurance processes and locally agreed care pathways are in place for the testing.
Faecal calprotectin testing is recommended as an option to support clinicians with the differential diagnosis of IBD or non-IBD (including IBS) in children with suspected IBD who have been referred for specialist assessment, if:
  • appropriate quality assurance processes and locally agreed care pathways are in place for the testing.
These recommendations are from faecal calprotectin diagnostic tests for inflammatory diseases of the bowel (NICE diagnostics guidance 11).

Implementation tools

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Source guidance

Patient experience in adult NHS services pathway

View the 'Patient experience in adult NHS services overview' path

Paths in this pathway

Pathway created: October 2012 Last updated: January 2014

Copyright © 2014 National Institute for Health and Care Excellence. All Rights Reserved.

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