Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop

Abstract

Aim: The PRISMA project is aiming to co-ordinate research priorities, measurement and practice in end-of-life (EOL) care in Europe. As part of PRISMA we undertook a questionnaire survey and a subsequent workshop to (1) identify clinical priorities for EOL care research in Europe and propose a future research agenda and (2) identify barriers to EOL care research, and possibilities and solutions to improve the research.

Methods: Thirty participants selected among the principally medical survey responders from 25 European countries attended. Twenty-six answered a preparatory pre-workshop questionnaire based on the survey results. Group work was a main part of the workshop.

Results: Consensus was reached on the following priorities for EOL cancer care research in Europe: symptomatology, issues related to care of the dying, and policy and organisation of services. Methodology was regarded important in all areas, including assessment/measurement and classification. Symptom research should particularly emphasise pain, fatigue, cachexia, delirium and breathlessness. Research should move from descriptive to interventional studies. The lack of consensus on definitions and outcomes was identified as a substantial research barrier. Other barriers were related to capacity and funding, environment and culture and knowledge transfer and dissemination. These areas are interrelated and should not be addressed in isolation.

Conclusion: Consensus was obtained on priority areas and research nature for EOL care research in the next years, and a model for addressing barriers was developed.