‘Children do not fit into the adult mould’
Inaugural lecture
The healthcare system still treats children as though they are small adults. And that approach does not work, says Lissy de Ridder, professor and head of Paediatrics, in her inaugural lecture.
In an interview ahead of the lecture, she explains her central message: ‘Healthcare still doesn’t put children first. Treatments and medicines are usually designed for adults and only later adapted for children. It should be the other way round.’
Children do not fit into an adult system
De Ridder has worked for 20 years as a paediatric gastroenterologist, mainly treating children with Crohn’s disease and ulcerative colitis. Over those years she has seen the same pattern time and again: the healthcare system is built around adults, with children are expected to expected to fit into structures that were never designed for them.
According to her, this is most visible in the development of medicines. ‘There are currently 14 medicines on the market for Crohn’s disease. For children, there are only two.’ The gap does not exist because children need these treatments any less, but because research regulations are geared towards large adult populations.
‘When it comes to approving medicines for children, the pharmaceutical industry applies standards that are just as demanding as those for adults, if not more so. But that simply does not work.’
Regulators such as the European Medicines Agency (EMA) are, she argues, too committed to requirements that are unworkable for children. A study into a new Crohn’s treatment, for example, must include 220 participants.
‘There are not that many children with the disease in the Netherlands.’ As a result, studies move painfully slowly or never begin in the first place, while new children continue to fall ill in the meantime.
Far greater consequences
The consequences of incorrect or delayed treatment are also far more serious for children than for adults. De Ridder saw this in her own research.
‘We wanted to understand how children responded to a particular medicine. But three-quarters of those children were given a much lower dose than adults. Everyone was understandably cautious, but that caution meant the treatment just didn’t work. In fact, children needed a much higher dose. The problem was that this had never been properly evaluated, so nobody knew.’
Because the pharmaceutical industry has little incentive to conduct research involving children, most medicines that reach the market are developed for adults. Paediatricians then prescribe those medicines to children anyway.
‘We do that in good faith, but it does mean that doctors are often forced to work by trial and error. And in that situation the risk no longer sits with the pharmaceutical company or the regulator, but with the doctor, the family and the child.’
Jumping through endless hoops
De Ridder does not place the blame solely on industry. Regulation itself also works against progress. ‘You have to jump through far more hoops.’ Because there are so few children involved, studies have to be spread across many different centres. A hospital may only be able to include two patients.
‘And more centres mean more rules around privacy, consent and ethical review. I understand why those safeguards exist, but the requirements become so complex that running a study is barely manageable.’
The system needs fundamental change
Paediatricians have been sounding the alarm for years. In the meantime, they have joined forces through international networks. De Ridder is one of the driving figures behind those collaborations. ‘For example, we have a group of 30 paediatric gastroenterologists across Europe who meet every year and carry out studies together.’
But however valuable these partnerships may be, they do not solve the deeper problem. ‘The system was not designed for children. Children do not fit into the mould designed for adults. And as long as we continue pretending otherwise, children will face risks that could have been avoided.’
What the alternative should look like, she is saving for her inaugural lecture. But she is already clear about one thing: ‘the system needs fundamental reform, not minor adjustment.
Lissy de Ridder will give her inaugural lecture on 11 May (16:00 – 17:00 hrs.). This will be streamed live. VRead the transcript of the lecture via the same link.
Putting the child at the centre
As head of Paediatrics at the Willem-Alexander Children’s Hospital (WAKZ) at the Leiden University Medical Center (LUMC), De Ridder sees a clear mission ahead: making paediatric care at the LUMC future-proof and genuinely centred around children in the broadest possible sense.
Paediatrics is one of the core disciplines of an academic hospital such as the LUMC. Within that setting, care, research and teaching should reinforce one another. Her ambition is to continue building on what she calls the LUMC’s flagship paediatric specialisms, including paediatric cardiology, stem-cell transplantation and neonatal care for premature babies.
None of these specialisms operates in isolation, she says. They rely on close collaboration with healthcare professionals and organisations at the regional, national and international level. ‘Through our scientific research, we contribute to the continuous improvement of care. And by taking a leading role in both healthcare and research, we strengthen knowledge and expertise, making us attractive to emerging talent.’