Thanks to advances in paediatrics, more children are surviving serious illnesses, and more are growing up with a chronic condition. However, this does not automatically mean they will grow up healthy. Fatigue, pain, concentration problems or difficulty keeping up at school and with friends often go unnoticed. According to paediatrician and Professor of Interdisciplinary Preventive Paediatrics Sanne Nijhof, this calls for a different way of looking at health.
In her inaugural lecture on 17 September, she advocated an approach that supports children in their development, even if they have a chronic condition.
For Nijhof, the coronavirus pandemic highlighted just how strongly societal events can influence children’s development and well-being. “The pandemic really brought home to me just how vulnerable development can be,” says Nijhof. “How dependent children are on predictability, play, social contact and safety.” This brought her back to the question at the heart of her work: what determines whether a child can continue to develop healthily?
According to Nijhof, healthcare is still heavily organised around diagnoses. These are important for recognising and treating illnesses, but they are far from always revealing how a child is really doing. Sanne: “Much of what shapes the daily lives and development of children with an illness cannot be captured by a diagnosis. For example, children may be severely fatigued, in pain or experience concentration difficulties; symptoms that occur across various diagnoses and can have a major impact on their day-to-day functioning.”
According to her, health arises from the constant interaction between the child and their environment: at home, at school, in friendships and in society. That is why social paediatrics looks not only at illness, but also at day-to-day functioning, development and participation. This perspective is confirmed by research involving children with chronic conditions. When they themselves describe what health means to them, it rarely concerns their diagnosis. They mainly talk about having energy, being able to be themselves and being able to join in with their peers.
To provide better support for children, Nijhof is particularly keen to highlight what often remains hidden. For example, our PROactive study conducted by her group shows that around 22 per cent of children with a chronic condition experience severe fatigue. Strikingly, differences in fatigue are only partly explained by the diagnosis itself. Factors such as physical and social functioning, mental health and perceived pressure at school appear to be much more strongly linked to these differences. That is why, she argues, the research question is shifting: “Why does one child continue to develop well despite a chronic condition, whilst another child gets stuck?”
For Nijhof, this knowledge at a group level is the starting point, but not the end point. The next step is personalised prevention: gaining an ever-better understanding of for which child, at what point in time and in what context development or health comes under pressure – and where, precisely, opportunities lie to support them. In this way, support can be provided earlier and tailored more specifically to what an individual child needs.
Our healthcare system is largely structured around clearly defined diagnoses, standardised treatments and evidence at a population level. This works extremely well for many conditions. However, preventive and personalised care also requires scope for differences between children, individual assessment and learning throughout the care process.
This becomes particularly apparent in the case of new and complex clinical conditions. Knowledge in these areas develops gradually, whilst children and families need care right now. Parents are seeking appropriate care, professionals want to provide it, and health insurers and policymakers are asking for evidence. At the same time, existing frameworks for research, assessment and funding may lag what is needed in healthcare. When these worlds do not align sufficiently, children fall between the cracks. Then a systemic problem becomes a problem for the individual child.”
According to Nijhof, the further development of paediatrics requires not only high-quality specialist care but also greater integration between disciplines and between research, care and prevention, always centred on the child’s development and day-to-day functioning.
This approach is also central to her own research. Within the PROactive cohort, Sanne Nijhof and her team are now monitoring nearly five thousand children with various chronic conditions over the long term. By linking medical data with patient-reported outcomes on aspects such as fatigue, quality of life and daily functioning, it becomes clear how children with different conditions function and develop over time.
This vision is in line with the broader developments at the Wilhelmina Children’s Hospital (WKZ) and UMC Utrecht, where research is increasingly being linked across disciplines and clinical conditions. Within the 030-lab, researchers, healthcare professionals and data scientists are collaborating on research and innovation relating to children’s health. The wider Child Health Disease Cohort brings together data from more than 10,000 children to gain a better understanding of how illness, treatment and other factors relate to health and development, from pregnancy through to early adulthood.
Through her chair, Sanne Nijhof aims to further strengthen this development. Her ambition is a form of paediatrics in which biological processes, day-to-day functioning and the living environment are considered in conjunction, and in which scientific insights contribute directly to better care for children.
In this context, prevention means more than simply preventing illness. It means identifying at an early stage what might hinder a child’s health and development, as well as what might support it, so that action can be taken in good time. Personalised prevention takes this a step further: translating knowledge gained from large groups of children ever more precisely into an understanding of what this child, at this precise moment and in this specific context, needs in order to continue developing as well as possible.
Nijhof calls this ‘making the invisible visible’. By linking research, care and prevention, she aims to contribute to a learning healthcare system in which children receive the support they need in good time. So that every child – even when illness is part of their life – has the chance to develop as well as possible, to participate and to flourish, both now and in the future. This life-course approach forms an important starting point for scientific research in Utrecht.
