Palliative Care Database

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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).



Background

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).

Results

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.

Graph

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.

http://pcl.cochrane.org/

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 Kerry Harding (kerry.harding2@ouh.nhs.uk).





Annotations


Types of evidence (adapted from Bandolier (see link on right))

Type A evidence.  Stated to be a systematic review with or without a meta-analysis.

Type B evidence. Stated to be a randomised controlled trial.

Type C evidence. Stated to be a quasi-experimental study such as a non-randomised controlled study, an interrupted time series, or controlled before and after study.

Type D evidence. Stated to be descriptive study.

Type E evidence. Expert opinion from working groups, committees or other respected authorities.



Priorities of Care

Priority 1. Recognise. The possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly.

Priority 2. Communicate. Sensitive communication takes place between staff and the person who is dying and those important to them.

Priority 3. Involve. The dying person, and those identified as important to them, are involved in decisions about treatment and care.

Priority 4. Support. The people important to the dying person are listened to and their needs are respected.

Priority 5. Plan and do. Care is tailored to the individual and delivered with compassion – with an individual care plan in place.



Other annotations

Audit- where a study (which may be research) has identified key issues such as opinions and experience of carers or patients.

Education- studies associated with education – usually of palliative care staff.

Ethics- issues related to the ethics of research.

Needs assessment- studies identifying the needs of palliative care patients.

Prognosis.

Research- issues relating to research methodology or assessment of PC research.

Research proposal- description of a planned research project or protocol.

Service delivery- relating to service provision in different settings including homes.

Staff- issues relating to staff including attitudes.

Training- training needs.

Volunteers- studies about their role or other aspects.