Clinical priorities, barriers and solutions in end-of-life cancer care research across Europe. Report from a workshop
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.
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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
References (24)
- et al.
Dying with cancer, living well with advanced cancer
Eur J Cancer
(2008) - et al.
Symptom priority and course of symptomatology in specialized palliative care
J Pain Symptom Manage
(2006) - et al.
A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease
J Pain Symptom Manage
(2006) - et al.
Measurement of breathlessness in advanced disease: a systematic review
Respir Med
(2007) Cancer cachexia: developing multimodal therapy for a multidimensional problem
Eur J Cancer
(2008)- et al.
A framework for generalizability in palliative care
J Pain Symptom Manage
(2009) - et al.
Palliative care research – priorities and the way forward
Eur J Cancer
(2008) - et al.
Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups
BMJ
(2008) - et al.
Methodological and structural challenges in palliative care research: how have we fared in the last decades?
Palliat Med
(2006) - Reflecting the positive diversities of European priorities for research and measurement in end-of-life care...