• Early Onset Inflammatory Bowel Disease

    The Lancet Child and Adolescent Health journal recently published an article about early-onset paediatric inflammatory bowel disease by members of the gastroenterology team at Southampton Children’s Hospital.

    Photo of members of the paediatric gastroenterology team at Southampton Children’s Hospital

    Dr James Ashton, Prof Sarah Ennis and Prof Mark Beattie, Southampton Children’s Hospital


    The key findings in the review will be of interest to anyone with a child who was diagnosed when they were 10 years of age or younger with inflammatory bowel disease. The study underscores the complexity of inflammatory bowel disease and the need for more research.

    CiCRA’s Family Information Days (including Birmingham on 14th October) include sessions focussed on Very Early Onset (0-5 years of age), as well as sessions for all children and young people, and their families.

    The incidence is increasing of early-onset inflammatory bowel disease (diagnosis at <10 years old).

    The younger someone is when they are diagnosed with IBD, the more likely there is a genetic influence leading to disease. In early-onset disease this is more likely to be related to a few genes with a big impact rather than many genes with a small impact.

    Early-onset inflammatory bowel disease is typically more severe than infantile-onset and adult-onset disease, although follow-up studies to assess long-term problems (including growth, surgery, frequent relapses etc.) have not yet been done. The younger children (5-10 years) tend to have more severe disease, and will have disease for a longer time (including through puberty). However it is not always the case that young onset is the worst – each child and family must be treated personally based on their own disease and situation.

    There are many aspects to successfully treating disease including managing the actual disease, the symptoms, growth, mental health and family support with a broad team of professionals (IBD nurse, psychological support, dietitian, paediatric gastroenterologist etc.)

    The advent of monoclonal antibody therapy has had a positive effect on the treatment of inflammatory bowel disease. Infliximab or adalimumab (and some new types just starting to be used in children such as vedolizumab), have vastly improved treatment for many patients. Although the effectiveness in early-onset disease is less certain, anecdotal evidence suggests treatment remains effective for many patients, more research is needed to gather more data for this age group.

    Additional challenges include the maintenance of growth, navigation of puberty, and transition to adult services for long-term management. In younger children, there is an increased need to successfully get the disease controlled to maximise growth, go through a normal puberty and eventually transition to adult services, allowing not only good physical health but mental health and educational/social development.

    Early referral to specialist paediatric gastroenterology services should result in the administration of structured and effective treatment and, in turn, a positive outcome for this group of susceptible patients. GPs/General Paediatricians are less likely to think of IBD in this age group, disease is often more severe and therefore it is important to treat as early and effectively as possible. Paediatric gastroenterology services have better access to all the other support that is often required (IBD nurse, psychological support, dietitian etc.). A further benefit of early referral is the potential early inclusion in research studies, building good relationships between the research team and the child/family at an early stage.

    For the full paper (which is quite technical and scientific because of the intended audience), please see the Lancet post.

    You need to register for an account to see the full text.

    The team at Southampton reviewed the evidence from over 100 research papers in this article, including basic scientific work, clinical research studies and drug trials. Research funding from CiCRA has contributed to several articles reviewed by Dr Ashton, Prof. Ennis and Prof Beattie, with important results contributing to the current knowledge of early-onset inflammatory bowel disease.

    ‘We hope that this review article helps to share knowledge and improve understanding for all those involved with the care of children with IBD’ says Dr. Ashton. ‘Without vital funding for paediatric IBD research, with CiCRA specialising in this area, we would not be able to continue to work hard to improve diagnosis, treatment and outcomes for children with Crohn’s and colitis.

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