What are Patients' Priorities for Palliative Care Research? A Questionnaire Study

Perkins et al. (2008) full text summary PDF

For which topic were research priorities identified?

palliative care

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

There is increasing emphasis on involving users in research in palliative care. The Research for Patient Benefit Programme (a major new English funding stream to support research within the National Health Service) particularly welcomes proposals developed in collaboration with patients and the public. The difficulties in conducting research with a palliative care population mean that it is important that research is focused on key priorities. One of the authors is an investigator in a study whose aim is to elucidate generalist health and social care workers’ palliative care research priorities, but it is essential to also discover patients’ priorities.

What was the objective?

to access the opinions of patients with advanced disease

What was the outcome?

a ranking list of 17 research topics

How long did the research prioritization take?

November 2004 - April 2006

Which methods were used to identify research priorities?

survey

How were the priorities for research identified exactly?

Step 1: survey consisting of 17 research topics each phrased with 'We should try to discover', participants were asked to indicate how important they thought each research topic to be, topic statements were grouped into 4 thematic areas, participants were also asked to rank these thematic areas

Which stakeholders took part?

Patients at Arthur Rank House Hospice in Cambridge and 4 other hospices. 112 participants.

How were stakeholders recruited?

Participants were recruited via hospices. Hospice in-patients and day therapy patients, 18 years or older, with cancer and a prognosis of six months or less (estimated by hospice staff) were identified and approached concerning the study.

Were stakeholders actively involved or did they just participate?

Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.