Children and IBD13/07/17Health
Professor Gigi Veereman, ESPGHAN secretary general and member of the UEG Public Affairs Committee, discusses the importance of calcium and vitamin D for children with IBD
Inflammatory bowel disease (IBD), which encompasses both ulcerative colitis and Crohn’s disease, is a long-term condition in which the gastrointestinal tract becomes inflamed, leading to often debilitating symptoms such as severe abdominal pain, fatigue and persistent diarrhoea. Incidence rates of the disease have been gradually increasing over the past few decades, with one in four cases now being diagnosed in children, who are at particular risk of developing poor bone health and development, vitamin D deficiencies, and permanent height deficits as a result.
More worryingly, a recent study conducted at the UK’s Great Ormond Street Hospital and presented at the 12th Congress of ECCO (European Crohn’s and Colitis Organisation) has revealed that around three quarters of paediatric IBD patients are not meeting the daily recommended intake of calcium and vitamin D – exacerbating the already harmful effects of the disease and leaving children at an even greater risk of suboptimal bone health.
Experts are therefore calling on healthcare practitioners as well as parents and carers to take immediate and effective action to ensure that children affected by IBD make the right food choices for their health and development. Here, Professor Gigi Veereman, secretary general of ESPGHAN (European Society of Paediatric Gastroenterology, Hepatology and Nutrition) and member of the UEG (United European Gastroenterology) Public Affairs Committee, discusses how best this might be achieved and in what other ways children and young people might be supported to manage the disease.
How does the impact of inflammatory bowel disease differ between children and adults?
IBD is a painful, debilitating and unpredictable chronic disease. Inflammation of the gut and difficulty absorbing nutrients such as calcium and vitamin D compromise growth, bone density and pubertal development in children and young people – a major difference to adults with the disease.
Besides these physical impacts, IBD also has a profound impact on children’s psychological and social wellbeing as it affects their ability to attend school, to take part in sports, and to play alongside their peers.
Incidence rates of IBD have been steadily increasing over the past few decades – to what would you attribute this?
IBD is not genetically inheritable, but it can be genetically influenced, so some people are more likely to develop the disease than others. That said, we consider it to be a multifactorial disease, and the general school of thought is that the epidemiological phenomenon we are seeing increase at the moment is being influenced by a Western way of living.
Nothing has been proven, but it’s very likely that environmental factors play a role, and chief among those is the food – and the ingredients in that food – that we’re eating now.
A recent study has shown that just 26.6% and 21.3% of children with IBD are meeting the recommended daily intake of calcium and vitamin D respectively, but both are essential for their development – why is this?
It is probably a general phenomenon that children do not take in the recommended daily amounts of vitamin D and calcium. This is of even more vital importance in children with IBD. Monitoring intake and providing advice for adequate nutrition is key. Prescription of supplements may often be indicated.
What action can parents and healthcare professionals take to ensure that children and young people reduce their risk of height deficits, poor bone health and other deleterious effects of IBD?
Most clinics do of course already work with nutritionists and dieticians to provide advice to parents of children with the disease. I would recommend, however, that parents receive personalised dietary advice at least twice a year in order to make sure that their child receives all the necessary nutrients and maintains a healthy diet. Along this topic, ESPGHAN will be publishing nutritional guidelines for children with inflammatory bowel disease in the coming months.
I would also suggest that physicians keep a very, very close eye on children’s growth, pubertal development and bone density.
How else might children living with IBD be better supported to manage the disease?
Something which is very important, and which is already well addressed in Belgium, is making sure that support is provided to children who miss school, for instance, in the form of home-schooling. Falling behind in your education can put undue stress on young people, which can lead to further illness.
It’s also important that the general public is made better aware of the disease. IBD comes with some particularly embarrassing and unsexy symptoms – no-one wants to admit that they have bloody diarrhoea or abdominal cramps. There is thus work to do around demystifying the symptoms and removing that taboo.
Along the same lines, people with the disease often need to use the toilet very urgently, which can discourage them from going out. Making public bathrooms more readily available and accessible would therefore be a great help to many. Again, this is a case where wider understanding would lead to improvements.
Specialised physicians, nurses and dieticians exist, but more research on the topic of nutrition would be helpful, as would more general – but evidence-based – information on healthy diets. Nowadays anyone can publish anything, so there is a lot of inaccurate and even potentially dangerous information out there, which needs to be avoided and warned against. For instance, there is much hype about avoiding lactose, but actually that’s very dangerous advice. Milk is a source of calcium and vitamin D, so going lactose-free might prove very deleterious for children and adolescents, particularly those with diseases that cause malabsorption.
How are ESPGHAN and UEG working to improve the lives of children and young people with IBD?
There is a very active group of experts within ESPGHAN called the Paediatric IBD Porto Group, which works to generate collaborative international research and to provide a leadership role concerning the current diagnosis and management of IBD in children. The group meets every year and is very active in organising networks for clinical studies. This is crucial to helping us understand why the disease is so frequent, how we should modify our dietary habits, and which drugs are the most efficient for children, and the safest.
The group is also undertaking a European study funded by a grant from Horizon 2020, and ESPGHAN has been lobbying alongside UEG for more attention to be paid to the disease at the level of the European Commission and the European Parliament, as well as for more research (and research funding) in the area of IBD and more research into children’s health in general.
Horizon 2020 calls are transversal, which means that any research into inflammatory diseases, for example, has to encompass all age groups. That’s a perfectly reasonable way to look at the problem, but children are affected in very specific ways and have very particular needs, and in the current Horizon 2020 programme, little to no attention is being paid to this. That needs to change.
ECCO also has a specific focus on children and young people, and, looking to the future, ESPGHAN would certainly like to develop its relationship with, and work more closely alongside them.
Professor Gigi Veereman
Secretary General, ESPGHAN
Member, UEG Public Affairs Committee
This article will appear in issue two of Pan European Networks: Health, which will be published at the end of August.