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

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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.

Introduction

Despite advances in cancer survival rates, end-of-life (EOL) care remains an essential aspect of cancer care. Likewise, research in EOL care should be an important part of cancer research in Europe. To date, however, there is a lack of high-quality research in EOL cancer care, and no co-ordinated plan for this type of research in Europe.1 Several reasons for this have been identified: lack of agreement on what constitutes EOL care,2 variations in assessment tools and outcomes, the heterogeneity of the palliative care population, limited number of original studies3 and scarce information on public or clinical priorities for this research area.2

PRISMA is a coordinating action project in the European Commission’s 7th Framework Programme.4 This 3-year project of integrated work packages (WP) aims to support and drive forward EOL cancer care research across Europe. The work packages will undertake actions to identify cultural differences in EOL care, establish a collaborative research agenda informed by public and clinical priorities and draw together best practice and resources for quality assurance.

In spring 2009, a pan-European survey of EOL cancer care research in Europe was conducted as part of PRISMA Work Package 3.5 The aim of the survey was to map research topics and activities, barriers and priorities. In September 2009, a European workshop was arranged to further explore the results and issues from the survey. This article is a report from the workshop, presenting and discussing its main conclusions.

The workshop had the following aims:

  • 1.

    To identify clinical priorities for EOL cancer care research in Europe, and to propose a future research agenda.

  • 2.

    To identify barriers to EOL care research, and possibilities and solutions to overcome the barriers and improve the research.

Section snippets

Workshop participants

The workshop participants were selected from the group of responders to the survey (127 responders from 36 countries), based on the following criteria: representatives (one per country) should be actively engaged in EOL care or palliative care, and preferably also in research, they should be well informed about the situation for EOL care research in their respective countries and be involved in national bodies, and have sufficient command of spoken and written English to participate in a

Pre-workshop survey

Twenty-six out of 30 participants returned the pre-workshop survey questionnaire before the workshop. The answers confirmed the most highly rated research topics from the survey. The research topics as well as the subtopics obtaining the highest level of agreement in the pre-workshop survey are presented in Table 1.

The pre-workshop survey showed 76% agreement on the three main barriers identified in the survey: lack of funding, insufficient knowledge and expertise, and lack of time.5

Group 1: Clinical priorities and future research agenda

Results

Discussion

The main recommendations from this workshop on EOL cancer care research are summarised as follows:

  • 1.

    Symptomatology should still have the main focus, including the development of guidelines. Basic research is necessary to increase the understanding of symptom pathophysiology.

  • 2.

    Methodology is important in all areas, including assessment and classification. International consensus must be sought.

  • 3.

    EOL care research should move from descriptive to interventional studies.

  • 4.

    Health services research is needed

Conflict of interest statement

None declared.

Acknowledgements

PRISMA, Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-Life Care, is funded by the European Commission’s Seventh Framework Programme (Contract No. Health-F2-2008-201655) with the overall aim to co-ordinate high-quality international research into end-of-life cancer care. PRISMA aims to provide evidence and guidance on best practice to ensure that research can measure and improve outcomes for patients and families. PRISMA activities aim to

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