Paediatric palliative care library

Dr Satbir Singh Jassal, in collaboration with the Cochrane PaPaS team and IKMD, presents a database of published research on paediatric palliative care. Click here to access the database, and find out more about the project below.

Paediatric palliative care library

Background

The sub-speciality of paediatric palliative care was first developed in 1984 at Helen House in Oxford. Throughout its infancy, paediatric palliative care has been hampered by the lack of good quality published research and evidence in terms of caring for and managing infants, children and young adults (ICYA). Initially much of the care of this group was extrapolated from adult palliative care data or paediatric data from other sub specialities. However it was obvious to anyone working within this field that ICYA are not just a smaller version of adults but have significant differences in terms of development, growth and metabolism to those of adults and particularly when one considers neonates.

Why this database was created

Over the last two decades there has been increasing research around the field of paediatric palliative care as well as research in Allied sub-specialities. Together for Short Lives (TFSL link) through their abstract Journal 'Synopsis' have attempted to collate all relevant papers to this field. In addition a number of books and manuals have been written on the subject which have also been referenced. Finally, the Association of Paediatric Palliative Medicine (APPM link) have been producing a drug formulary for use by specialists in paediatric palliative care which has led to a significant database of research around the use of drugs within this field. In 2017, at a joint meeting between Cochrane, APPM and Together for Short Lives, a request was made by Professor Philip Wiffen to collate all these different databases into a Cochrane-style library. Dr Satbir Singh Jassal was tasked to work with and produce a unified database which was then subsequently edited by the Cochrane team into an appropriate library.

Who is it for?

This library encompasses the largest database of published research on paediatric palliative care in the world. Primarily the library is for clinicians within the field to be able to quickly access evidence-based medicine for children under the care. It also provides a central reference source for researchers within the field to allow them to have quick access to published evidence within their chosen subject matter. Finally, the database allows family and carers of children with life-limiting conditions to be able to review the latest research evidence about the care of their child in terms of paediatric palliative management.

Acknowledgements

We would like to acknowledge Prof. Philip Wiffen, Anna Erskine, Prof. Christopher Eccleston and the rest of the Cochrane team involved with producing the library. In addition all the members of the Together for Short Lives, Synopsis Journal who have agreed to share their work.

Dr Satbir Singh Jassal

Medical Director, Rainbows Hospice for Children and Young Adults (website)