Why it’s Important to Invest in Child Health Research by Professor Terence Stephenson

Professor Terence Stephenson, a leading voice in paediatric medicine, recently highlighted this critical need to advance child health research in the Global Paediatrics Journal.

As Co-Lead of the NIHR (National Institute for Health and Care Research) Great Ormond Street Hospital Biomedical Research Centre Career Development Academy, Prof Stephenson brings valuable insights to this discussion. The following article delves into his key reflections on the subject.

In developing countries, young people often support and care for older generations so the health of younger generations may be prioritised more than in developed countries where clinical input can tend to come from experts in adult care rather than child health specialists. Adult cancer, heart disease, diabetes and adult mental health understandably dominate the speeches and policies of health ministers and child health can be forgotten. This is overlooking the very population that will have to care for and carry any health and financial burden of those voting today. Experts in child health can be advocates for research in children and young people which benefits all of society:

Primary prevention – stopping a disease from occurring.

Events in early life and even before a child is born can have profoundly negative consequences for the whole of adult life. For example, medication taken while pregnant can harm the unborn baby. Conversely, interventions can also have positive effects, like smoking cessation during pregnancy. Universal vaccination programs have greatly reduced disabling diseases like tetanus and polio. Research has driven these breakthroughs and if funded, will continue to make a huge difference.

Secondary prevention – detecting and treating a condition before symptoms appear.

For example, in the first few days of life, a ‘heelprick’ dried blood spot test can pick up a variety of illnesses that can now be treated, from an under-active thyroid gland to sickle cell disease. Outcomes for these diseases are improved by early diagnosis and treatment so research is essential to reduce the health and economic costs of these lifelong conditions.

Tertiary prevention – treating patients who have symptoms to reduce severity.

This includes some of the harshest conditions faced by our youngest population – for example, children’s cancer, meningitis and epilepsy. Research specific to children is vital for these conditions – they are not just ‘small adults’ who can be given smaller drug doses and see the same effects. We have made great steps forward for children’s health care through complex, multicentre trials. However, far more research resources are devoted to adult diseases at the end of life which feature more frequently in the media and in charitable fundraising than common and debilitating children’s disorders.

Learning from the COVID-19 pandemic

From ?March 2020 to October 2022, over 150,000 adult deaths in England and Wales were attributed to SARS-CoV-2 but only 88 were aged under 18. For children, acute SARS-CoV-2 infection was usually a mild illness. However, that is not to say that the pandemic had no impact on children and young people. Lockdown measures reduced social contact, educational access and family interactions. There has been limited research on the impact of these interventions on the social and cognitive development of children and their future educational and career prospects. This is essential to understand the risk-benefit of considering these approaches again. In the vaccination programme, children’s research followed adults. Any future pandemic could very well have harsher effects on children than on adults - how to approach this should be planned now.

Long-term follow-up studies

The long-term effects of disease and infections can be different for children compared to adults. Long-term follow-up from childhood into adulthood is therefore essential as there may be unforeseen, long-term complications after treatment. Thankfully we are treating more children for conditions that would previously have been fatal but this means we will have an adolescent and then adult population that have never before been seen, cared for or offered research opportunities. Large research studies that cover populations from birth into adulthood are complex and costly to run but without them, we risk not understanding the outcomes of our interventions.

Investing in early years

Research demonstrates that the early years are critical for how we grow and develop, physically, mentally and socially. An impossible-to-ignore, growing body of evidence, points to the fact that inequalities have a huge effect on health. We must invest in research from preconception, through pregnancy, into infancy and beyond, to know what interventions can combat the social inequity that all too often dictates long-term health. Spending on effective early years (i.e. prenatal to five years old) interventions delivers a greater return on investment than most other public programmes.

Investing in health – the economic argument

If politicians and policymakers are not persuaded by the clinical and moral arguments I’ve covered, there are compelling economic arguments. Investing in ’what works’ should yield financial benefits but we need research involving children, young people and carers to know ’what works’ and what interventions are ineffective.

Health inequalities have a significant financial cost. It was estimated in 2011 in England that inequality in illness costs each year ￡31-33 billion in productivity losses, ￡20-32 billion in lost taxes and higher welfare costs and ￡5.5 billion in additional NHS costs. In 2024, for every ￡1 invested by the British government's National Institute for Health Research, it is estimated that society receives ￡19 of benefits from direct health benefits and returns to the wider economy. This means that from the NIHR’s 2022-23 spend of ￡1.3 billion, there is an expected return of around ￡20 billion over the next 20 years.

Put simply, children are not small adults and future breakthroughs in preventing and treating children’s disease, with the health and economic benefits this brings, can only come about through adequate funding of research with children, for children.