Reflecting the Positive diveRsities of European prIorities for reSearch and Measurement in end of life cAre
Coordinator: Richard HARDING
Project Number: 201655
EC contribution: € 1,650,898.00
There is little coordination in undertaking research in end of life care. This is due to lack of agreement on what constitutes “end of life” cancer care, no information on public or clinical priorities for achieving a “good death” in a culturally diverse Europe, few appropriate measures of quality, and a lack of established best practice. “PRISMA” aims to deliver an integrated programme to coordinate research priorities and practice. The work packages will undertake actions to identify cultural differences in end of life care, establish a collaborative research agenda informed by public and clinical priorities, and draw together best practice and resources for quality measurement. The Palliative Outcome Scale (POS) is a multidimensional tool that measures the physical, psychological, spiritual and information needs of patients and families at the end of life. It has been culturally adapted in 20 EU countries and widely used by over 100 services to evaluate and improve quality of care. However, there have been no opportunities to share practice, identify shared and country-specific domains, and coordinate to improve research across Europe. By coordinating POS use, “PRISMA” will offer a model to optimise end of life care research and measurement and identify both commonalities and differences in the evaluation of quality indicators for cancer patients and their families across Europe. Incorporating wide public/clinical consultation with the coordination of POS use into this programme will advance scientifically sound practice while taking account of cultural difference and public expectations. Through integrated action, we will exchange experience, shape best practice, and plan future collaboration through identification of priorities. This will enable research to harmonise and reflect the diversity and the needs of European citizens and clinicians.