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Ulcerative colitis: management in adults, children and young people (NICE Clinical Guideline CG166)
  1. Emily Stenke1,
  2. Séamus Hussey1,2
  1. 1National Centre for Paediatric Gastroenterology, Our Lady's Children's Hospital, Dublin, Ireland
  2. 2School of Medicine and Medical Science, University College Dublin and the National Children's Research Centre, Dublin, Ireland
  1. Correspondence to Dr Séamus Hussey, National Centre for Paediatric Gastroenterology, Our Lady's Children's Hospital, Crumlin, Dublin 12, Ireland; seamus.hussey{at}


The National Institute for Health and Care Excellence (NICE) published a clinical guideline in 2013 entitled ‘Ulcerative colitis: Management in adults, children and young people (NICE Clinical Guideline CG166)’. This guideline review discusses the evidence base, compares the guideline with current practice and published guidelines, and summarises the key points relevant to pediatricians who manage children with UC.

  • Gastroenterology
  • Paediatric Practice

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Information about the current guideline

The National Institute for Health and Care Excellence (NICE) published this guideline in June 2013. It summarises the key points relevant to paediatricians who manage children with ulcerative colitis (UC) and covers therapies for inducing and maintaining remission in ambulatory and hospitalised adults and children with mild to moderate and acute severe UC.1 The 14 member Guideline Development Group included a single paediatric gastroenterologist and a paediatric bone disease specialist.

Previous guidelines

Unlike adults, the majority of children with UC have extensive and severe disease at diagnosis.2 Previous paediatric UC guidelines have included the British Society for Paediatric Gastroenterology, Hepatology and Nutrition and the joint European Crohn's and Colitis Organisation/European Society for Paediatric Gastroenterology, Hepatology and Nutrition guidelines.3 ,4 The latter addressed the unique differences in the treatment of UC in children versus adults and was developed by a group of 27 paediatric gastroenterology experts, following a systemic review and consensus process.

Key issues that this guideline addresses:

  • Treatment of children with UC being primarily directed by paediatric gastroenterologists working as part of a paediatric IBD multidisciplinary team

  • Child and family-centred approaches to information and decision making.

  • Induction therapy (see table 1):

    1. Mild-moderate UC:

      • First-line—oral aminosalicylates with or without topical aminosalicylates or oral beclometasone dipropionate (limited paediatric data for latter);

      • Second-line: oral prednisolone (stop beclometasone);

      • Third-line: oral tacrolimus (rather than recommending a trial of intravenous steroids)

    2. Severe UC:

      • First-line: intravenous steroids

      • Second-line: ciclosporin or surgery (to start within 3–5 days if steroid unresponsive: infliximab not recommended in guideline)

  • Maintenance therapy:

    1. Mild-moderate UC:

      • First-line: aminosalicylates (topical, oral or both)

      • Second-line: oral thiopurines (≥two relapses/year or steroid dependence; azathioprine or mercaptopurine).

    2. Following any severe episode: First-line—oral thiopurines

      • Long-term monitoring of growth and puberty in children with UC (growth impairment and pubertal delay rarely complicate paediatric UC, unlike paediatric Crohn's disease: paediatric clinicians usually monitor these parameters as part of routine care, especially in patients with chronic disease activity or requiring multiple steroid courses.3 ,5 ,6)

Table 1

NICE versus ECCO/ESPGHAN guideline

What should I stop doing?

  • Stop using prolonged intravenous steroid courses to induce remission in severe UC. Consider next-line therapy (medical and/or surgical) within 72 h of treatment for patients that fail to improve or deteriorate at any time.

  • Stop using frequent (≥two per year) or prolonged courses of steroids without addressing maintenance therapy needs.

What should I ensure I've started doing?

  • Refer all children with UC to a paediatric gastroenterologist.

  • Arrange prompt paediatric MDT input (paediatric gastroenterologist, IBD nurse, paediatric surgeon, stoma nurse) for children presenting with severe acute UC; combined adult gastroenterology and general paediatric management of such cases is not the acceptable standard of care.

  • Using the PUCAI score to document disease activity in children with UC.7

  • Documenting a PUCAI score and assessing the need for surgery daily in patients with severe acute UC (see table 2).

  • Although not in the NICE guideline, check stool samples for bacterial culture and Clostridium difficile toxin at each acute exacerbation.3

Table 2

Paediatric Ulcerative Colitis Activity Index7: Score 0–85

What can I continue to do as before?

  • Discuss all treatment options with the patient and family at regular intervals.

  • Provide age appropriate oral and written information.

  • Involve the patient in the decision making process.

  • Offer primary rectal therapy for proctitis, and as adjunctive therapy for more extensive disease.

  • Use aminosalicylates (mesalazine, sulfasalazine) as first-line agents to induce remission in mild-moderate disease of any phenotype. Combination of oral and rectal therapy is superior to either alone.

  • In mild-moderate disease with non-response to first-line therapy within 4 weeks, step up to oral prednisolone.

  • In severe disease, commence steroids to induce remission.

  • Refer to local policies and the British National Formulary for Children for guidance on drug dosing.

What should I do differently?

  • Ensure that local policies are in place for monitoring treatments (ciclosporin, tacrolimus, azathioprine, infliximab).

  • Consider DEXA scans to monitor bone health in children with frequent exacerbations or long-term steroid use.

Life-saving or limb-saving points?

  • Get early input from a paediatric gastroenterologist and their MDT in severe UC.

  • Step up to second-line therapies promptly in patients with acute severe UC who deteriorate or fail to improve despite treatment with intravenous corticosteroids. A paediatric surgical consultation should also be obtained at that point.

Unresolved controversies

This NICE guideline advocates the use of ciclosporin over infliximab in paediatric UC, despite the paucity of literature to support this and in contrast to international evidence-based paediatric guidelines.4 ,8 Here, infliximab is only recommended in cases of severe acute colitis where ciclosporin is contraindicated; or in the context of a clinical trial (see box 1). This interpretation is challenging, especially for children already taking thiopurine therapy. Adult data has not yet demonstrated superiority of ciclosporin.9 Paediatric data has demonstrated efficacy of infliximab in children with moderate to severe UC, with initial response rates as high as 75% and sustained response rates of 28–62%.10–12

Box 1


The guideline did not address faecal transplantation as a novel treatment for UC, or the use of heparinoids for thrombophrophylaxis, despite evidence that hospitalised children with IBD are at an increased risk of thromboembolic events.13–16

The evidence to support the use of currently available probiotics, specific diet regimens and antibiotics as adjunctive therapies in the management of ambulatory paediatric UC is weak, and these issues are not addressed in the NICE guideline.

Clinical bottom line

  • Most children have extensive and severe ulcerative colitis at diagnosis. Children and families need to be provided with appropriate information about the disease and its treatment options. The goal is to achieve and maintain remission with minimal treatment side effects; this may be more consistently achieved with the widespread implementation of evidence-based guidelines and adherence to the UK IBD audit standards.17 With appropriate treatment and support children should be able to achieve normal growth, puberty and psychosocial development.



  • Contributors Conception and design; ES; manuscript draft, revision and final approval: SH.

  • Competing interests None.

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