UZ Brussel launches “Krachtig met Pijn"

According to international studies, around twenty per cent of children and adolescents suffer from chronic pain. These figures are staggering. "From a medical point of view, we refer to pain as chronic when it persists for more than three months", explains anaesthetist and pain specialist Annelies Scholliers of UZ Brussels. "Pain acts as a warning signal: you put your hand on a hot plate, feel a sharp pain and instinctively pull your hand away. With chronic pain, pain is no longer a warning signal, but the disease itself." 

In children, this mainly involves diffuse pain symptoms such as persistent headaches and stomach aches. "Most cases follow the same pattern: a child visits the doctor, undergoes all kinds of tests, but all the results are normal. The pain is difficult to objectify, but it is definitely there."

It is precisely this invisible nature that makes chronic pain so complex. "When tests fail to identify a physical defect, it is often dismissed as 'all in the mind', says Veerle Cosyns, paediatric psychologist at UZ Brussels. "A referral to a psychologist often meets with resistance from families. It feels as if their complaints are being dismissed. But just because nothing physical can be found, it doesn't mean the pain is imaginary." 

Accurate information is crucial. "We explain what happens in the brain in cases of chronic pain: the pain system is misaligned and goes into alarm mode too quickly or too often. It is also a physical problem, only you can't see it on a scan or in blood test results." 

And chronic pain is more than just a medical problem. "Children miss school, give up hobbies, spend less time with friends... Everything that is normally taken for granted disappears. That affects their development", emphasises psychologist Sati Cirakci. "Parents reorganise their lives around the pain, hospital admissions and school absences. Siblings adapt accordingly. The impact of chronic pain weighs heavily on families. In addition, patients and their families are often not believed or taken seriously. Society's thinking about chronic pain is fundamentally flawed. Education is essential: for families, schools, employers, healthcare providers... the whole of society."

The treatment of chronic pain remains a challenge. "We already have few treatment options for adults. With children, we are even more limited", says Dr Scholliers. "There is little evidence for medication, especially in the long term, and the side effects are significant. We know that non-medicinal treatments work best: cognitive behavioural therapy, ACT therapy, bodywork, etc." 

With the "Krachtig met Pijn" (Powerful with Pain) project, UZ Brussel wants to make precisely this multidisciplinary, non-medicinal care more accessible. "We felt that a different approach was needed," says psychologist Sati Cirakci. "Powerful with Pain is not a standard programme. We start from a multidisciplinary perspective – biological, psychological and social – and put together a tailor-made care package for each child, referring them to therapists in their neighbourhood." 

As one of the charities supported by De Warmste Week, the team wants to remove financial barriers. "For many conditions, psychological care is partially reimbursed, but not for chronic pain", emphasises Veerle Cosyns. "A session with a psychologist can easily cost 70 euros. This is unfeasible for many families. In addition, some children benefit more from other forms of treatment: physical therapy, hypnotherapy or therapeutic massage, for example. We want to make that possible within the project as well." 

The project will not end after De Warmste Week. Dr Scholliers: "In the next phase, we want to develop online psycho-education modules and roll out educational packages for schools. There is currently very little available, even though there are so many possibilities. Now is the time to lay the foundations for the future."

Prevention and early treatment are an important part of the puzzle. Acute pain that is not properly treated increases the risk of chronic pain. "We see this link particularly clearly in premature babies", explains Dr Scholliers. "In neonatology, they undergo dozens of painful procedures every day. Early experiences help shape the pain system." 

Positive care experiences, on the other hand, reduce the likelihood of anxiety and avoidance of care. "For example, the literature clearly shows that children who are held down by force during an injection are more susceptible to anxiety and chronic pain later on", adds Veerle Cosyns. "The more awareness we can create around this, among everyone in the hospital, the better we can prevent chronic pain. That may take a little more time, but that investment will pay off later. This also applies to healthcare providers, because seeing a child suffer weighs heavily on them. When a procedure can be carried out in a calm manner, everyone goes home with more confidence. I am convinced that every children's hospital is making efforts, but that we are still only at the beginning."

"I hope that thanks to our project, chronic pain in children will finally receive the attention it deserves", says Veerle Cosyns. "Especially among those who are not yet very sensitive to it. If schools and workplaces were to take a different view, that would already be a big step forward. It would eliminate the stigma."

Unfortunately, eliminating all chronic pain is a utopian dream. "Our main goal is to improve children's quality of life and future prospects", emphasises Sati Cirakci. "We want them to be able to function again, within their limits, without the pain remaining all-consuming. As a society, we must dare to invest in early, multidisciplinary care. Preventive measures for young children are still too rare today, even though they can save so much money in the long term." 

As a university hospital, UZ Brussel also wants to accelerate scientific research into pain in children. "There are major gaps in scientific knowledge about both acute and chronic pain", says Dr Scholliers. "Pain is not an objective measurement. We therefore have to rely on self-reporting, which is influenced by all kinds of factors. The fact that many pain medications are used 'off label' in children makes research even more complex. We need to better understand which approach works for which children. At present, it is often trial and error: we have various tools, but little scientific guidance and little exchange of expertise between hospitals." 

So there are still many opportunities on the table. "And if I can really dream big, I see a specialised rehabilitation centre for children with chronic pain, offering both hospitalisation and outpatient programmes. Such centres already exist in Canada, with good results."