Crohn’s disease is complex condition with varying presentations and an unpredictable disease course. Although remarkable milestones have been achieved over the last two decades with regard to understanding the causation of the disease, physicians are generally unable to offer patients definite information about their disease progression and individual outcomes. A recent paper published with data from the Belgian national registry for paediatric Crohn’s disease (BELCRO) looked at the disease outcomes at 24 months and 36 months following diagnosis. Patients in this study included individuals diagnosed with Crohn’s disease before the age of 18 years, between 2008 and 2010. Clinical details were available in 84 out of the 98 patients initially included in the study.
Approximately 70% of the patients were in remission at the three-year follow-up; 24% continued to have mild disease; and 6% of patients had moderate to severe features of the disease. Around 60% of patients were already on biological treatment (infliximab, adalimumab) at three years. A significant proportion of patients included in the study received care from adult gastroenterologists at their three-year follow-up. It was observed that adult gastroenterologists had a much lower threshold to start biological treatment compared to paediatric gastroenterologists, averaging five months for initiation compared to 14 months. Despite this, the proportion of patients in remission at three years was higher in the group of patients under paediatric care. The reasons for this observation are unclear. Another key observation from this study was that over time, improvements in weight are much better compared to height.
It was observed that the adult physicians commonly tended to use biologics as mono-therapy rather than in combination with other drugs, such as azathioprine or 6-mercaptopurine. Compliance with medication was also highlighted as an issue in young adulthood, as parental supervision decreases and patients take responsibility for their own medication. The study did not identify any factors that were related to the observed clinical outcomes at three years. None of the variables, such as age, sex, diagnostic delay, type of treatment, disease location in the bowel, and growth were linked to outcomes at three years. Two other reports − from a Hungarian registry (2010−2013) and from the IBD collaborative research group in the US − reported similar findings.
Over the last few years, national IBD audits have been conducted annually in the UK to provide improvements in patient care by auditing our nationwide clinical practice. A national IBD registry is now up and running as follow-on from the IBD audits. The aim is to ultimately develop a complete register of all IBD patients in the country, which will be a highly beneficial tool to assess long-term outcomes in IBD in the UK.