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Paediatric palliative care research priorities in a Cochrane context: From priorities to answerable questions

Author: Dr Susie Lapwood, Head of research and professional development, and senior specialty doctor at Helen and Douglas House – hospice care for children and young adults, Oxford UK, APPM Executive
27 March 2017
  • Prof Myra Bluebond-Langner sums up a productive day of discussions

It was nearly three years ago that I made my first (but long overdue) direct contact with the Cochrane Pain, Palliative and Supportive Care group (PaPaS).

I had been working in paediatric palliative care (PPC) for over 15 years, and had spent much of my medical training and career in and around Oxford, as it happens the birthplace of the Cochrane organisation.

I had followed development of the PaPaS group with interest, but noted that there had as yet been no Cochrane reviews specifically in our paediatric palliative care field (unlike in adult palliative care).

I had a couple of specific ideas for reviews and wondered how we might begin to take things forwards.

What were we trying to do?

Meeting with Professor Christopher Eccleston, Co-ordinating Editor of PaPaS, he too had recognised this gap in Cochrane reviews and was keen to support wider engagement with our emerging subspecialty.

So the idea was born to host a day bringing together leaders and experts in paediatric palliative care research (and related fields), with leaders and experts within Cochrane, to start a wider conversation, in the hope of: 

  • Introducing Cochrane methods and the Cochrane review process to the PPC community
  • Underlining and sharing the known priorities for paediatric palliative care research 
  • Considering which of these priorities might be well served by undertaking a Cochrane review as part of the research 
  • Beginning to translate a few of these priorities into possible Cochrane review questions.

What happened?

The day saw over 60 invited experts and leaders gather at the Institute of Child Health, London, to be welcomed by Prof Eccleston. 

Prof Myra Bluebond-Langner set the scene from the PPC research perspective, drawing together the main research priorities in PPC already identified through previous studies internationally (e.g. NICE 2016, Liossi et al 2016, Baker et al 2015, Downing et al 2015, Liben et al 2014, Hain et al 2012, Knapp et al 2009, Steele et al 2008: see references).

She grouped these into four broad subject areas: the illness experience, decision making, pain and symptom management, and service development and delivery.

She invited us to consider what of these priorities might be ‘Cochrane-able’ and how a Cochrane review might help.

Prof Eccleston and Anna Erskine then gave a helpful introduction to Cochrane, now a global independent network, aiming to produce high quality, independent, useful and accessible systematic reviews of best evidence to inform healthcare decision-making.

Reviews may investigate the effects of interventions, for example for prevention, treatment, rehabilitation, or organisation of care. 

Christopher highlighted the value of undertaking Cochrane reviews for the researchers and for their organisation, as well as in enhancing the evidence base and informing practice.

He underlined the fact that an ‘empty’ review (finding no evidence) can itself have value to direct resources for future research. 

He then gave helpful tips about how to get involved, and explained some of the training and support resources available from Cochrane.

There followed a very helpful question and answer session, benefitting from Cochrane experts on the panel and in the audience (including David Tovey (Cochrane Editor in Chief)).

There was constructive discussion, particularly around the place of qualitative methods in Cochrane reviews, and around potential relationships between Cochrane and other reviewing processes and organisations such as NICE.

The rest of the day we worked in small groups, each with representatives from both Cochrane and PPC. We first asked ‘What do we want to know?’ considering our stakeholders, thinking about what we want to know, and what sort of evidence matters, and then considering priority topics for evidence synthesis and summary (possibly through a Cochrane review).

After sharing feedback, we returned to our groups to ask ‘How can we make the questions answerable?’, each group considering one or more of these priority subjects.

For those topics felt to be ‘Cochrane-able’, we began to outline the bones of a review question, trying to define for each an appropriate population, intervention, comparator and outcome(s): some good foundations for future work.

It was a privilege to witness this unique meeting of experts, with constructive shared listening and learning amongst delegates of such high calibre from both PPC and Cochrane backgrounds.

What are our hopes for the future?

The day closed with Christopher suggesting practical ways forwards. This included the invitation to get involved with the Cochrane community, (for example through membership, peer reviewing, social media), as well as to inform the Cochrane key priority list.

In summing up, Myra reminded us that the research question should drive the methodology (not vice versa).

We need first to ask the right question, then pick the right study method.  As she said, ‘Cochrane PaPaS has opened the door. Dare we walk through…?’

I hope and expect that this will generate continuing productive conversations and collaboration between researchers in PPC and Cochrane PaPaS.

How can you find out more?

Do check out the main Cochrane website where there is a wealth of useful information and training resources (www.cochrane.org; www.training.cochrane.org; www.cochranelibrary.com).

Follow their Facebook and Twitter feeds:  @cochranecollab; @CochraneLibrary; @CochraneUK;  #CochraneEvidence.  

In particular, check out the Cochrane Pain, Palliative and Supportive Care group website (http://papas.cochrane.org/) and Twitter feeds:   @CochranePaPaS,  #CochranePPCP, #painevidence

With grateful thanks particularly to Prof Myra Bluebond-Langner, Together for Short Lives/ APPM research group, Prof Christopher Eccleston, Anna Erskine (Managing Editor for Cochrane PaPaS) and Anin Mitra (Administrator at ICH) for their input to envisioning and planning, and to ICH for use of the venue.

Particular thanks to all those expert delegates who made it a priority to attend, to listen constructively with grace and openness, to learn, to think and to share their insights and aspirations, in the interests of improving care for the children, young adults and families we seek to support. Thankyou everyone, and watch this space!

References

Baker JN, et al., Research Priorities in Pediatric Palliative Care. J Pediatr, 2015. 167(2): p. 467-70 e3.

Downing, J et al., Priorities for global research into children's palliative care: results of an International Delphi Study. BMC Palliat Care, 2015. 14: p. 36.

Hain R, Heckford E, and McCulloch R, Paediatric palliative medicine in the UK: past, present, future. Arch Dis Child, 2012. 97(4): p. 381-4.

Knapp CA, Research in pediatric palliative care: closing the gap between what is and is not known. Am J Hosp Palliat Care, 2009. 26(5): p. 392-8.

Liben S, Papadatou D, and Wolfe J, Paediatric palliative care: challenges and emerging ideas. Lancet, 2008. 371(9615): p. 852-64

Liben S, Langner R, and Bluebond-Langner M, Pediatric palliative care in 2014: much accomplished, much yet to be done. J Palliat Care, 2014. 30(4): p. 311-6.

Liossi C, Anderson A-K, and Howard RF on behalf of NIHR CRN-C CSG in pain and palliative care, Development of research priorities in paediatric pain and palliative care, Br J Pain 2016

NICE guideline [NG61], End of life care for infants, children and young people. Published date: December 2016  https://www.nice.org.uk/guidance/indevelopment/gid-cgwave0730

Steele, R et al., Research priorities in pediatric palliative care: a Delphi study. J Palliat Care, 2008. 24(4): p. 229-39.

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