The Cochrane Pain & Palliative Care (PAPAS) Workshop on children’s palliative care on 24 February prompted me to set some thoughts down about the importance of research in children’s palliative care.
It was so poignant to have Professor Myra Bluebond-Langner at the helm for the day. Back in 1977 she sat by the bedside of dying children and wrote about their ‘private worlds’. Forty years on, and there is still so much of their world we need to learn about. We have a duty to capture as much evidence as we can to form a solid foundation for the future development of children’s palliative care in the UK and to work with our partners around the world.
“We must now prioritise research”
The lack of evidence in the sector is a real problem and serves as a barrier to the future sustainability of children’s palliative care services. This was highlighted by the NICE guideline development group and also in the recently published report by Anne Pinney which demonstrated the lack of reliable and consistently collected data sets for children and young people with complex disabilities.
There are many reasons why research is difficult in children’s palliative care – the complex ethical issues, professional gate-keeping, the difficulties of doing RCTs in this field. And yet we know that families are in fact very often keen to take part in research if they are given the opportunity. In these difficult economic times, and being a small and specialised sector, we must now prioritise research to ensure that we can make an evidenced case to funders.
We were also reminded at the Workshop of the importance of identifying research questions that are impactful – even if there is insufficient evidence and the resulting Cochrane review is ’empty’, there is still huge value in bringing to light a research question which is worthy of future investment and exploration.
“Evidence that is critical”
In her keynote presentation at the Workshop, Professor Myra Bluebond-Langner outlined four critical areas of research:
- the illness experience of CYP and families
- the decision-making process between families and professionals
- pain and symptom control
- service development and delivery
These areas chime very strongly with our own research priorities at Together for Short Lives. We are committed to working with others to build the evidence base relating to the numbers of affected children and young people, the variations in service provision, the cost benefit of providing good quality children’s palliative care and outcomes for children and families. This is evidence that is critical to identifying the variation in provision and the unacceptable postcode lottery experienced by families.
Together for Short Lives established a joint Research Group with the Association of Paediatric Palliative Medicine and through this group are bringing together many of the key academics and research-active practitioners in the UK. There is clearly a committed community of academics and clinicians keen to build this evidence base.
However, we would like to do much more to raise awareness of, and engagement in, research across the children’s palliative care sector:
We will be working with Hospice UK to develop an action plan in response to the survey that we carried out with our membership in the autumn last year. Our twice-yearly research abstract listing Synopsis is a very useful tool to help you keep up to date with published research, and we plan to improve this so that we can really shine a light on important pieces of research.
With the Cochrane PAPAS initiative – encouraging and assisting authors to write systematic reviews, the NICE research recommendations, children’s palliative care research centres at the Louis Dundas Centre and the new Martin House Research Centre we have a golden opportunity to work together. Let’s build our much-needed evidence base, working together with universities, other service providers and of course with young people and families.