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Palliative care is developed primarily outside academic institutions and with a primary focus upon service development. Initiatives to formalise the research structure were taken in Europe in 1996 by the European Association for Palliative Care (EAPC) through the establishment of the EAPC research network, and in 1998 in United Kingdom through the establishment of a palliative care research society. Most studies conducted in cancer palliative care up to now have been small and descriptive without the necessary quality to give input into evidence based medicine. The study population is described and defined differently between studies and there is no consensus on how to measure the most important outcomes, such as symptoms including pain, fatigue and depression in palliative care research. During the last decade, large research groups have been established in some countries--partly based upon national and international grants. In order to improve palliative care research nationally and internationally, these few groups of sufficient size and of sufficient output need to be given the responsibility and incentives to perform collaborative research nationally and internationally. It is necessary to train a sufficient number of clinician scientists within palliative care research and to give these scientists the possibility of permanent research posts in particular combined clinical and research posts after the research training period. National and international funding needs to continue and successful collaboratives need to receive predictable, sustainable funding. Since the majority of palliative care patients come from oncology, it is important to establish a close collaboration between these two disciplines. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

BACKGROUND: Health-related quality of life (HRQOL) questionnaires should ideally be adapted to the individual patient and at the same time scores should be directly comparable across patients. This is achievable using a computerised adaptive test (CAT). Basing the CAT on an existing instrument enables measurement within an established HRQOL framework and allows backward-compatibility with studies using the original instrument. Because of these advantages the EORTC Quality of Life Group (QLG) has initiated a project to develop a CAT version of the widely used EORTC QLQ-C30. METHODS: We present the EORTC QLG's strategy for developing a CAT. For each dimension of the EORTC QLQ-C30 our approach includes literature search and conceptualisation, formulation of new items, expert and patient evaluations, field-testing, and psychometric analyses of the items. The strategy is illustrated with the initial results of the development of CAT for physical functioning (PF). RESULTS: We identified 975 PF items in the literature. Of these, 407 items were deemed relevant, i.e. measured one of the PF aspects measured by the QLQ-C30. Based on these items we developed 86 new items. Review by the EORTC CAT-project group reduced this to 66 items. Based on expert and patient evaluations several items were revised and the list was further reduced to 51 items. CONCLUSIONS: Based on the findings for PF, we believe that our approach will generate item pools that are relevant and appropriate for cancer patients. These will form the basis for a backward-compatible CAT assessing the HRQOL dimensions of the EORTC QLQ-C30. [ABSTRACT FROM AUTHOR]