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The rising incidence of inflammatory bowel disease (IBD) in Ireland has necessitated a shift in thinking on the part of physicians and changes in the way care is delivered. While much remains to be learned about the aetiology of the condition, treatment advances mean that care can be delivered in a more patient-focused way, particularly for children, the most vulnerable IBD patient population.
Dr Séamus Hussey is a Consultant Paediatric Gastroenterologist at Our Lady’s Children’s Hospital, Crumlin, Associate Clinical Professor of Paediatrics in UCD and Honorary Senior Lecturer in Paediatrics at the RCSI. Dr Hussey has been instrumental in helping to shape the way IBD care is delivered to Irish children and he told the Medical Independent (MI) that he has noted an increase in the incidence of IBD in children since his return six years ago from a post in the Hospital for Sick Children in Toronto, Canada.
“When I came home, my colleagues and I undertook some research to examine the increase in paediatric IBD rates since the year 2000,” he said. “We published a paper on that in 2012 and since then, we have looked at the numbers a little more closely. There has been an increased incidence across the board, but notably we found a three-fold increase in IBD, especially ulcerative colitis, in children aged under 10 years..”
He pointed out that when he began as a junior trainee in 2002, between 30-to-35 new cases were being diagnosed each year. Today, Dr Hussey and his colleagues are diagnosing more than 100 new cases annually in children aged under 16 years. However, he points out that the true number of children with IBD in the community is probably closer to 400-to-500.
While the numbers are quantifiable, the cause of disease onset is more difficult to assess. “A lot of parents and patients ask whether there is something they have or have not done, if there is something in the diet that caused the IBD,” he told MI. “But it’s not as clear-cut as coeliac disease, for example, and there is no definitive factor we can put our finger on. Patients and parents need reassurance that they have not caused this disease.”
Since 2012, Dr Hussey has been leading the DOCHAS study, which looks at determinants and outcomes for children and adolescents with IBD. “We are trying to research, prospectively, every patient from point of referral to diagnosis and beyond that. What we have looked at are various factors in the literature that have been suggested to be associated with IBD, such as increased intestinal infections in the preceding years, medications, family history and so on. Unfortunately, nothing has shown up as being very significant at this stage, but it very early days from a research standpoint to draw any conclusions.” A lot more is now known about the heritability of the condition, said Dr Hussey, but the vast majority of paediatric IBD patients do not have a first-degree relative with IBD. “We understand perhaps 10-to-20 per cent of the genetics, but there’s an awful lot more we just haven’t uncovered yet. Technology has not caught-up with our genetics, but that will happen in time.”
‘Treating the patient and not the disease’ is a phrase that particularly applies to children with IBD, explains Dr Hussey. “You treat the patient but you also need to engage with parents and other family members. One-third of children with IBD are in need of psychological help for low mood and adjustment difficulties due to their condition. It really can have a significant impact on their psychosocial development.”
Lack of resources
He also pointed out that lack of resources is having a detrimental impact on the ability to deliver the best care for children with IBD. “If you have a well-resourced service that can actually proactively manage these elements, you can make far greater inroads and really turn a child’s life around. If you have an ad-hoc, poorly-resourced service — or if children are just treated like ‘mini-adults’ — it becomes a disaster. Some historical practices in Ireland saw children and teenagers treated in adult centres, just like adults, and that doesn’t wash at all. That has not been the standard of care internationally for years now, but it still happens, even today.”
Children nationally are still undergoing endoscopies outside of the direction of trained paediatric gastroenterologists, sometimes without access to anaesthesia, resulting in incomplete examinations that have to be repeated, Dr Hussey pointed out, emphasising the need to “stamp that practice out”.
“We are so poorly resourced in terms of getting access to endoscopy that we are now left in a very difficult situation,” he told MI. “It is inappropriate for children and adolescents to get endoscopies outside of paediatric services, but on the other hand, what are parents to do?”
In terms of manpower, “we are at about 50 per cent of what we need to deliver the service properly,” he explained. “This has an impact, not just within the hospital, but nationally — it’s not just about needing more consultants, but right across the multidisciplinary team. We receive about two-to-three times more referrals each week for endoscopies than we actually have the capacity for.”
In fact, children are waiting longer for diagnostic endoscopic procedures than their parents or grandparents would for the same clinical indications, Dr Hussey pointed out. “The Minister needs to address this,” he said. “There is a national programme in paediatrics, but there isn’t one for gastroenterology. IBD is not one of the higher-profile conditions in terms of the media; it’s amazing how many people can’t believe that a child aged six, eight or 10 can have IBD, not to mention need biologic treatment or surgery.”
Dr Hussey and his colleagues have just published research to show that using exclusive enteral nutrition was superior to steroids in patients newly-diagnosed with Crohn’s. “We are changing the natural history of IBD,” he told MI. “We are becoming much more savvy in the medical management of this disease, particularly severe ulcerative colitis. But this comes at a price — you need the team to be able to monitor patients, you need to have rapid access to services and you need to be able to respond in a timely fashion.
“Unless somebody at high political level is willing to make this a priority, it’s not going to be made a priority by anybody else.”
Returning to the psychosocial aspect of the disease, Dr Hussey explained that a child with IBD “will not get the same level of empathy” from their peers as a young person with a physically-visible disease, for example. “If a child has a broken leg, their friends can see the cast and they can sign it and they can see that when the cast is gone, they are improving with physiotherapy and so on. It is much harder for them to explain, ‘I have this complicated disease, nobody knows what caused it, I’ll have it for the rest of my life, I’m on treatment that will probably change, I get medication side-effects, I need lots of blood tests, I can feel terrible, I have no energy, I’m anaemic, I get diarrhoea, there are foods I can’t have because there’s a narrowing in my gut, I have chronic pain,’ and so on.
“Many teenagers don’t want to discuss private, personal issues with their peers and you can be absolutely sure these won’t want to talk about their pain and diarrhoea. So for many of these children, on top of everything else, it can be a very lonely disease to have.”
This can mean that young IBD patients potentially live for months or years with symptoms of their disease before approaching anybody for help, said Dr Hussey. However, he added: “It’s fantastic to see a child respond to treatment, to see their life turn around. Their eyes light-up and they regain some of that badly-needed weight and start to grow. To have a 10-year-old who is the height of a five- or six-year-old, or a 14-year-old who is the height of an eight-year-old because of the chronic effects of steroids — we are just not seeing those patients as much anymore because with newer medications and better monitoring, we can change the natural history of the disease and avoid its side-effects. It’s wonderful to see — if only we had the resources to do it better and on a wider scale.”
He pointed to the enormous amount of good will among healthcare professionals. “Our nurses, psychologists and dietitians will run courses at weekends, develop family resources and do an awful lot of things outside of standard working hours,” he told MI. “They always go the extra mile and nobody is ‘on the clock’ here.”
For the GP, it can be a challenge to identify IBD in children and differentiate it from stomach bugs or other infections but most GPs will recognise chronic symptoms for what they are, Dr Hussey said. “Chronic symptoms are one of the key features to raise that index of suspicion. Nowadays, there are more sophisticated tests, blood tests and stool tests, including a stool calprotectin test. Although this latter test is not easily obtainable in general practice, it can be very useful.
“But children with chronic diarrhoea and other features will raise a ‘red flag’ with GPs who will refer to the local general paediatric service, from where they can consider referring them on to us. Unfortunately, there are only 3.5 whole-time equivalent paediatric gastroenterology consultants for the whole of Ireland, so we depend on general paediatricians for their initial assessments.”
Dr Hussey concluded: “There is a support group for children with IBD and their families, www.gutsykids.ie, and there are a lot of resources on there.
“Parents should be advised to carefully interpret what they read on the Internet or social media regarding causes or treatments of IBD; nobody can, as yet, personalise the explanation for an individual’s IBD. There is nothing worse than parents being made feel guilty by stories related to dietary habits or environmental factors in IBD.
“But the future is really bright. Within one year, over 90 per cent of our patients are in remission, so we can be very confident. That’s a huge success rate but endoscopy access is the rate-limiting feature at the moment and it behoves the Minister for Health and the HSE to decide whether children are a priority or not.”
This article was sponsored by AbbVie. The company has had no influence or editorial control over any aspect of the article