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Crohn’s disease overview

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Crohn’s disease HAI

About

What is covered

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.

Updates

Updates to this pathway

4 March 2015 Minor maintenance update.
25 February 2015 Inflammatory bowel disease (NICE quality standard 81) added to this pathway.
16 December 2014 Insertion of a collagen plug to close an abdominal wall enterocutaneous fistula NICE interventional procedure guidance 507 added.
12 May 2014 Minor maintenance updates
2 January 2014 Minor maintenance updates
15 April 2013 Minor maintenance updates
8 January 2013 Minor maintenance updates

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.

Short Text

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

What is covered

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.

Updates

Updates to this pathway

4 March 2015 Minor maintenance update.
25 February 2015 Inflammatory bowel disease (NICE quality standard 81) added to this pathway.
16 December 2014 Insertion of a collagen plug to close an abdominal wall enterocutaneous fistula NICE interventional procedure guidance 507 added.
12 May 2014 Minor maintenance updates
2 January 2014 Minor maintenance updates
15 April 2013 Minor maintenance updates
8 January 2013 Minor maintenance updates

Sources

NICE guidance

The NICE guidance that was used to create the pathway.
Crohn's disease (2012) NICE guideline CG152

Quality standards

Inflammatory bowel disease

These quality statements are taken from the inflammatory bowel disease quality standard. The quality standard defines clinical best practice for inflammatory bowel disease care and should be read in full.

Quality statements

Specialist assessment

This quality statement is taken from the inflammatory bowel disease quality standard. The quality standard defines clinical best practice in inflammatory bowel disease care and should be read in full.

Quality statement

People with suspected inflammatory bowel disease have a specialist assessment within 4 weeks of referral.

Rationale

A confirmed diagnosis of inflammatory bowel disease is always made in an age appropriate specialist setting using a combination of haematological, endoscopic, histological and imaging based investigations. A delay in assessment and diagnosis can be associated with adverse consequences, such as clinical complications and a negative effect on the person’s quality of life. Some people with suspected inflammatory bowel disease who have severe symptoms will need an urgent specialist assessment, the urgency of which will depend on clinical need and might include an emergency admission, but no one should wait more than 4 weeks from referral for a specialist assessment.

Quality measures

Structure
Evidence of local referral pathways to ensure that people with suspected inflammatory bowel disease have a specialist assessment within 4 weeks of referral.
Data source: Local data collection. Data on referral pathways for urgent referrals are available in the National audit of inflammatory bowel disease (IBD) service provision, question OC1.2, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, question OC2.1.
Process
Proportion of people with suspected inflammatory bowel disease who have a specialist assessment within 4 weeks of referral.
Numerator – the number in the denominator who have a specialist assessment within 4 weeks of referral.
Denominator – the number of people with suspected inflammatory bowel disease who are referred for specialist assessment.
Data source: Local data collection. Data on the time it takes for urgent referrals to be seen are available in the National audit of inflammatory bowel disease (IBD) service provision, question OC1.3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, questions OC2.4 and 2.6.
Outcome
Patient experience of the referral process.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (district general hospitals) ensure that local referral pathways are in place so that people with suspected inflammatory bowel disease are referred quickly and efficiently, and have a specialist assessment within 4 weeks of referral.
Healthcare professionals ensure that they follow agreed local referral pathways so that people with suspected inflammatory bowel disease are referred quickly and efficiently, and have a specialist assessment within 4 weeks of referral.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that make use of agreed local referral pathways so that people with suspected inflammatory bowel disease are referred quickly and efficiently, and have a specialist assessment within 4 weeks of referral. This can be achieved through enhanced monitoring of contracts and establishing regular and timely auditing procedures.

What the quality statement means for patients, service users and carers

People with suspected inflammatory bowel disease are seen by a specialist in hospital for an assessment within 4 weeks of being referred by their GP. This means that a diagnosis can be made without delay and treatment options can be discussed. The specialist assessment might involve having blood tests or endoscopy (using a camera to provide images of the inside of the body). Inflammatory bowel disease includes Crohn’s disease and ulcerative colitis. Sometimes it is not possible to tell whether a person has Crohn’s disease or ulcerative colitis, and they may be described as having ‘inflammatory bowel disease unclassified’ (IBDU).

Source guidance

Definitions of terms used in this quality statement

Suspected inflammatory bowel disease
People with any of the following lower gastrointestinal symptoms that have been present for at least 6 weeks should be suspected of having inflammatory bowel disease:
  • abdominal pain or discomfort
  • bloating
  • change in bowel habit (such as diarrhoea with or without rectal bleeding).
Faecal biomarkers, such as faecal calprotectin, alongside clinical assessment may be useful in primary care to distinguish between suspected inflammatory bowel disease and non inflammatory bowel disease, such as irritable bowel syndrome. [Adapted from Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel NICE diagnostics guidance 11, section 3.1, and IBD Standards, standard A4]. The Quality Standard Advisory Committee noted that, in some people with severe symptoms, inflammatory bowel disease might be suspected before the symptoms have been present for 6 weeks, and these people need earlier referral (before 6 weeks).
Specialist assessment
People with suspected inflammatory bowel disease should be referred for specialist assessment using local referral pathways by a GP directly to a defined specialist (consultant gastroenterologist or consultant paediatric gastroenterologist) or to an age appropriate inflammatory bowel disease service. Specialist assessment enables consideration of a possible diagnosis of inflammatory bowel disease using a range of investigations. These include clinical evaluation and a combination of biochemical, endoscopic, radiological and histological investigations to confirm a diagnosis. [Expert opinion and British Society of Gastroenterology guidelines, section 3.3]
Within 4 weeks of referral
The timeframe of 4 weeks is based on expert consensus and is intended to be a safety net to ensure that no one waits longer than 4 weeks for specialist assessment. However, it is recognised that some people with suspected inflammatory bowel disease who have severe symptoms will need an urgent specialist assessment. In such cases ‘within 4 weeks’ is subject to clinical judgement and a considerably shorter timeframe may be necessary, for example within 2 weeks. Therefore an effective local referral pathway should ensure that people with suspected inflammatory bowel disease are seen within 4 weeks of referral, or more rapidly if clinically necessary. Services that already see patients earlier than 4 weeks from referral should maintain this speed of referral and assessment. [Expert opinion and IBD Standards, standard A4]

Equality and diversity considerations

The symptoms of inflammatory bowel disease may have a different impact on people of different gender, sexuality, culture and age. Referral processes and assessments need to be sensitive to individual anxieties and take into account any additional needs, such as the availability of doctors of the same sex, and any language barriers.

Multidisciplinary team support

This quality statement is taken from the inflammatory bowel disease quality standard. The quality standard defines clinical best practice in inflammatory bowel disease care and should be read in full.

Quality statement

Services provide age appropriate support from a multidisciplinary team for people with inflammatory bowel disease, and their family members or carers.

Rationale

Inflammatory bowel disease can have diverse effects on a person. In addition to its physical impact, there can be emotional, psychological and social consequences. A multidisciplinary team has a wide range of expertise that can help address these issues, and it is important that services for people with inflammatory bowel disease provide this support.

Quality measures

Structure
Evidence that services provide age appropriate support from a multidisciplinary team for people with inflammatory bowel disease, and their family members or carers.
Data source: Local data collection. Data on patient support and the inflammatory bowel disease team are available in the National audit of inflammatory bowel disease (IBD) service provision, sections 2 and 3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, sections 2 and 3.
Process
a) Proportion of people with inflammatory bowel disease where there is a documented discussion about their needs, and the needs of their family members or carers (if appropriate), for age appropriate support from a multidisciplinary team.
Numerator – the number in the denominator where there is a documented discussion about their needs, and the needs of their family members or carers (if appropriate), for age appropriate support from a multidisciplinary team.
Denominator – the number of people with inflammatory bowel disease.
Data source: Local data collection.
b) Proportion of people with inflammatory bowel disease whose needs, and the needs of their family members or carers (if appropriate), for age appropriate support from a multidisciplinary team are met.
Numerator – the number in the denominator whose needs, and the needs of their family members or carers (if appropriate), for age appropriate support from a multidisciplinary team are met.
Denominator – the number of people with inflammatory bowel disease whose needs for age appropriate support from a multidisciplinary team are recorded.
Data source: Local data collection.
Outcome
a) Satisfaction of people with inflammatory bowel disease with the support provided.
Data source: Local data collection. The Experience of inpatients with ulcerative colitis throughout the UK audit asks various questions about patient experience of support in hospital.
b) Satisfaction of family members or carers of people with inflammatory bowel disease with the support provided.
Data source: Local data collection.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (district general hospitals) ensure that systems are in place so that people with inflammatory bowel disease, and their family members or carers, have age appropriate support from a multidisciplinary team.
Healthcare professionals work within a multidisciplinary team to provide age appropriate support to people with inflammatory bowel disease, and their family members or carers.
Commissioners (clinical commissioning groups) ensure that they commission services in which people with inflammatory bowel disease, and their family members or carers, have age appropriate support from a multidisciplinary team.

What the quality statement means for patients, service users and carers

People with inflammatory bowel disease, and their family members or carers, have support from a care team made up of a range of different professionals (including nurses, doctors, dietitians and pharmacists). The type of support they get should depend on the person’s age (for example, whether they are an adult or a child), and should help to deal with any concerns about the condition and its treatment.

Source guidance

Definitions of terms used in this quality statement

Age-appropriate support
Age appropriate support should be broad based and offered by those who are best placed at the time to meet the needs of people with inflammatory bowel disease and their family members or carers. A person's support needs will vary depending on age. For example, a child or young person's concerns might be more focused on body image, transition between services and attending school and higher education, whereas an adult might be more concerned with employment and sexual issues. Other issues for which people may need support include concerns about the disease and its treatment, nutrition and diet, and other aspects of living with a chronic illness. Support could include signposting to reliable and accurate information on a broad range of topics or having access to a dedicated telephone or email service where people can raise concerns or questions. [Adapted from Crohn's disease NICE guideline CG152 and IBD Standards, standard A11]
Multidisciplinary team
An inflammatory bowel disease multidisciplinary team should comprise gastroenterologists, colorectal surgeons and clinical nurse specialists with particular expertise and specialist interest in inflammatory bowel disease, a dietitian allocated to gastroenterology, and a pharmacist, pathologist and radiologist with special interest in gastroenterology. The team should have access to essential supporting services with an interest in inflammatory bowel disease, including a psychologist or counsellor, rheumatologist, ophthalmologist, dermatologist, obstetrician, nutrition support team, paediatric gastroenterology clinical network and general practice. There should be a named clinical lead for the inflammatory bowel disease team. [Adapted from IBD Standards, standards A1 and A2]

Surgery

This quality statement is taken from the inflammatory bowel disease quality standard. The quality standard defines clinical best practice in inflammatory bowel disease care and should be read in full.

Quality statement

People having surgery for inflammatory bowel disease have it undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.

Rationale

Better patient outcomes are more likely if surgery for inflammatory bowel disease is undertaken by a colorectal surgeon with expertise and experience in inflammatory bowel disease surgery, with the support of an experienced clinical team. Such expertise is most likely to be in a unit where such surgery is performed regularly. The expertise and experience of the clinical team will enable the best judgement of when to undertake surgery, and should ensure the quality of clinical care before, during and after surgery.

Quality measures

Structure
Evidence of local arrangements to ensure that people having surgery for inflammatory bowel disease have it undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.
Data source: Local data collection. Data on surgery for inflammatory bowel disease are available in the National audit of inflammatory bowel disease (IBD) service provision, section 3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, section 3.
Process
Proportion of surgical procedures for inflammatory bowel disease undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.
Numerator – the number in the denominator undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.
Denominator – the number of surgical procedures for inflammatory bowel disease.
Data source: Local data collection and Hospital episode statistics from The Health and Social Care Information Centre.
Outcome
Complications after surgery.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (district general hospitals and specialist tertiary centres) ensure that surgery for inflammatory bowel disease is undertaken by a colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team.
Healthcare professionals undertake inflammatory bowel disease surgery if they are colorectal surgeons with expertise and experience in such surgery, or refer people to a colorectal surgeon with relevant expertise and experience who is a core member of the inflammatory bowel disease multidisciplinary team.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services from providers who can demonstrate that surgery for inflammatory bowel disease is undertaken by colorectal surgeons who are core members of inflammatory bowel disease multidisciplinary teams.

What the quality statement means for patients, service users and carers

People who have surgery for inflammatory bowel disease have their operation carried out by a specialist surgeon called a colorectal surgeon who is a member of the inflammatory bowel disease care team. This will make it more likely that the operation is a success and ensure good care. Patients should always be involved in the decision to have surgery after a discussion of the benefits and risks.

Source guidance

Definitions of terms used in this quality statement

Surgery for inflammatory bowel disease
The types of operation performed for inflammatory bowel disease include colectomy, ileo–anal pouch procedure, ileostomy and intestinal resection. [Adapted from Crohn's disease NICE guideline CG152, Ulcerative colitis NICE guideline CG166 and British Society of Gastroenterology guidelines]
Colorectal surgeon who is a core member of the inflammatory bowel disease multidisciplinary team
The surgeon should have expertise and experience in undertaking surgery for inflammatory bowel disease and be able to make informed decisions about the need for surgery and the timing of surgery. Their predominant workload should involve inflammatory bowel disease and they should be a core member of the inflammatory bowel disease multidisciplinary team. Skilled and experienced surgeons, supported by an experienced clinical team, are most likely to be in units where such surgery is performed regularly.
When emergency procedures have to be performed, these may need to be done by a surgeon with the appropriate skills and experience who is available to perform the surgery. Children and young people should have their operations performed by surgeons with expertise in operating on children and young people with inflammatory bowel disease.
[Expert opinion and IBD Standards, standard A12]

Equality and diversity considerations

People from different cultures who need certain surgical procedures for inflammatory bowel disease, such as stoma operations, may need additional support if such procedures are not considered acceptable in their community.

Monitoring drug treatment

This quality statement is taken from the inflammatory bowel disease quality standard. The quality standard defines clinical best practice in inflammatory bowel disease care and should be read in full.

Quality statement

People receiving drug treatment for inflammatory bowel disease are monitored for adverse effects.

Rationale

People with inflammatory bowel disease may experience different responses to drug treatment, including adverse effects. How a person responds to drug treatment therefore needs to be monitored using local safety policies and procedures, and treatment adjusted to ensure the best quality of life outcomes and patient safety.

Quality measures

Structure
Evidence of documented local safety policies and procedures to monitor for adverse effects in people receiving drug treatment for inflammatory bowel disease.
Data source: Local data collection. Data on local protocols and monitoring arrangements for immunosuppressives are available in the National audit of inflammatory bowel disease (IBD) service provision, section 3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, section 3.
Process
Proportion of people receiving drug treatment for inflammatory bowel disease who are monitored for adverse effects.
Numerator – the number in the denominator for whom there is documented evidence that there is monitoring for adverse effects of drug treatment according to local safety policies and procedures.
Denominator – the number of people receiving drug treatment for inflammatory bowel disease.
Data source: Local data collection. Data on local protocols and monitoring arrangements for immunosuppressives are available in the National audit of inflammatory bowel disease (IBD) service provision, section 3, and the National audit of paediatric inflammatory bowel disease (IBD) service provision, section 3. Data on treatment follow up, acute reactions and adverse events are available in the results tables of the National clinical audit of biological therapies, Adult report and Paediatric report.
Outcome
The number of adverse events reported because of drug treatment for inflammatory bowel disease.
Data source: Local data collection. Data on adverse events are available in the results tables of the National clinical audit of biological therapies, Adult report and Paediatric report.

What the quality statement means for service providers, healthcare professionals and commissioners

Service providers (general practices and district general hospitals) ensure that they have documented local safety policies and procedures that are used for monitoring for adverse effects in people receiving drug treatment for inflammatory bowel disease and for acting on abnormal results.
Healthcare professionals ensure that they monitor for adverse effects in people receiving drug treatment for inflammatory bowel disease, using documented local safety policies and procedures, and they act on abnormal results.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services in which there is monitoring for adverse effects in people receiving drug treatment for inflammatory bowel disease, using documented local safety policies and procedures, and abnormal results are acted on.

What the quality statement means for patients, service users and carers

People taking medication for inflammatory bowel disease have regular check ups for any side effects, and healthcare professionals take action if there are any concerns. This will lower the chances of the person having problems caused by the medication. People should be helped by their care team to understand treatment options and monitoring, including benefits, risks and possible consequences.

Source guidance

Definitions of terms used in this quality statement

Drug treatment for inflammatory bowel disease
A number of drugs are used to treat inflammatory bowel disease, depending on the type and severity of the disease, observed side effects, contraindications and patient preference. Drugs used include aminosalicylates, corticosteroids, biological treatments and immunosuppressives. Full details of treatment options for people with inflammatory bowel disease, including drug treatment, can be found in NICE guideline CG152 and NICE guideline CG166. [Adapted from Crohn's disease NICE guideline CG152 and Ulcerative colitis NICE guideline CG166]
Monitoring for adverse effects
Treatment of inflammatory bowel disease aims to induce remission and control symptoms. Monitoring for adverse effects should identify side effects and potential adverse outcomes from long term use. Treatments that can cause adverse outcomes include thiopurines, methotrexate, aminosalicylates, immunosuppressives and corticosteroids. [Adapted from Crohn's disease NICE guideline CG152 and Ulcerative colitis NICE guideline CG166]
Full details of side effects, contraindications and monitoring (including blood tests, procedures and clinical review) that should be carried out for specific drugs are detailed in the current online version of the British national formulary or British national formulary for children.
Local safety policies and procedures
There should be monitoring for adverse effects in people having drug treatment for inflammatory bowel disease using local safety policies and procedures. These should include:
  • shared care arrangements between primary and secondary care and clearly defined responsibilities for healthcare professionals in primary and secondary care
  • clear referral pathways
  • locally agreed monitoring guidelines
  • clear access routes to urgent care
  • a nominated member or members of the multidisciplinary team to act on abnormal results and reports of side effects and communicate with relevant healthcare professionals and people with inflammatory bowel disease (and/or their family members or carers, as appropriate). [Adapted from Crohn's disease NICE guideline CG152 and Ulcerative colitis NICE guideline CG166, and expert opinion]

Effective interventions library

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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.

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.

Pathway information

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.

Supporting information

Glossary

5-aminosalicylate
tumour necrosis factor
thiopurine methyltransferase

Paths in this pathway

Pathway created: October 2012 Last updated: March 2015

© NICE 2015

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