When a young patient’s life hangs in the balance, the last thing on the minds of stressed parents, families and patients would be to get involved in research. Or is it? Despite the turmoil, some brave families and children have volunteered to support clinicians in their research by taking part. Dr Padmanabhan Ramnarayan, Clinical Reader in Paediatric Critical Care in the Department of Surgery and Cancer and Honorary Consultant in Paediatric Intensive Care at Imperial College Healthcare NHS Trust and West London Children’s Healthcare, explains why.
I have been a children’s intensive care doctor for over 20 years, and for most of that time, I have been leading research that has involved critically ill children. My patients are young, their parents and families are super-stressed, and most of the treatments are given in an emergency – all of which seem like perfectly valid reasons to not involve sick children in research. Despite this, my experience is that parents and families are overwhelmingly in support of research. Why?
The evidence gap
Since children’s intensive care is a young speciality, much of our practice is ‘borrowed’ from adult intensive care or newborn intensive care. This is not ideal because our patients range from birth to 18 years of age, with diseases as diverse as asthma, respiratory infections, accidents and trauma, sepsis and brain injury. Without high-quality research to guide care, the treatments provided to sick children may not be the best or the most effective. Doctors and nurses, and parents and families, understand this. By agreeing to include their children in research studies, parents want to improve the care provided to future patients.
Over the past two decades, I have been able to witness a growing research movement in my speciality. Through clinical trials and bench-to-bedside research funded by the National Institute of Health and Care Research (NIHR) and other research bodies, sick children are beginning to benefit from better, evidence-based clinical care. Notably, clinical trials in children’s intensive care are not always about novel or experimental treatments – in fact, most trials have compared two widely practiced treatments (for example, different ways to provide breathing support to sick children or two different levels of oxygen in the blood) so that the most effective treatment is identified. This type of research (called ‘comparative effectiveness research’) may be more acceptable to parents of sick children. For us, it provides the most bang for buck in terms of improving clinical care. Despite so much progress, the number of doctors and nurses wanting to do research in our specialty has been decreasing.
The paediatric critical care incubator
An incubator is usually used to help young babies grow in a nurturing environment. Aptly named then is this new initiative from the NIHR – Paediatric Critical Care Incubator. This was recently funded to help ‘grow’ the next generation of researchers in children’s intensive care. I am delighted to lead this national effort. We have involved partners from University College London, Birmingham and Bristol as well as the parent of a past patient in this exciting new project, and identified four distinct themes to work on over the next three years:
- Developing the younger generation of researchers, not just from a medical background but also from nursing and allied health professional backgrounds (for example, pharmacists and physiotherapists)
- Training the next generation of researchers
- Providing mentorship and career guidance
- Most crucially, building a nation-wide network of parents and families to guide the research priorities for our speciality
This Incubator will help children’s intensive care leap ahead so that the latest advances in medicine can be safely tested and adopted to improve care for the sickest children in the country.
The COVID-19 pandemic showed us how research can save lives. Involving critically ill children in research is therefore not only possible, but also essential to improve clinical care – and I am eternally grateful that parents and families of sick children agree with me.