A Library of published palliative care and end of life research as an annotated bibliography
In 2014, the National Institute for Health Research (NIHR) in the UK commissioned a project to create a database of research published internationally that informs the practice of palliative and end of life care. The project was completed by key members of the PaPaS CRG (lead by Professor Philip Wiffen).
In the review of End of Life Care in the UK(see link below), serious concerns were expressed nationally about 1) a perceived lack of published research in the field of palliative and end of life care, 2) a lack of awareness of existing evidence, and 3) a lack of accessibility and utility of existing evidence.
A body of evidence does exist, much of it within Cochrane reviews, although often deeper than the top line evidence, but this had not been systematically assembled into one accessible and navigable resource.
We proposed to undertake systematic searching of international biomedical databases to identify research about the topic area of palliative and end of life care by searching the Cochrane Register of Studies as well as Medline and Embase. Search results were downloaded into an EndNote X7 database for de-duplicating and assessment. These records were then annotated as described below.
Annotating the titles in the Palliative Care Library
Records were annotated for the type of evidence reported, and linked to one or more of the priorities listed in the ‘Priorities of Care for the Dying Person’ published in June 2014(see link on right) by the Leadership Alliance for the Care of Dying People. This was done after discussion with Dr Bee Wee.
Annotations were based on the title and abstract only, without appraisal of complete articles. In addition to annotation for the type of evidence and the priority that the title relates to, other annotations as listed below were added where appropriate (see below).
We identified 20,465 citations after removing duplicates to build a library of 1801 records. These records were made up of Medline records: 1170, Embase records: 310 and Cochrane Central records: 270.
Access to the Library
The completed Library of published palliative care and end of life research is now available online, with the abstracts removed, due to copyright restrictions.
Search per annotation, e.g. Priority 1, or free text.
An EndNote X7 file of the full database is also available to palliative care specialists based in the UK on request, by emailing Anna Erskine (firstname.lastname@example.org).