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AIM: To evaluate the views of clinicians and researchers on their use of outcome measures and which questions are most important in palliative and end-of-life care. METHODS: Online survey of professionals working in clinical care, clinical audit and research in palliative care across Europe and Africa identified through national and international associations and databases. Questions focused on measures used, reasons and which questions were important in two commonly used multidimensional measures, the Palliative care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS). RESULTS: The overall completion rate was 59% (392/663). Three outcome measures were commonly used by over one in four respondents for clinical practice and over one in 10 for research: the Karnofsky Performance Scale (KPS), followed by the Edmonton Symptom Assessment Scale (ESAS) and the POS. Measures were used twice as often in clinical practice as in research. The main uses were similar: assessing patients' symptoms/needs (88% and 85% of POS and STAS users, respectively), monitoring changes (62%, 58%), evaluating care (61%, 48%) and assessing family needs (59%, 60%). Respondents rated the most important questions as pain, symptoms, emotional and family aspects. There were no differences in the choice of the most important questions between doctors and nurses or between researchers and clinicians. CONCLUSIONS: In palliative care, outcome measures often used in clinical practice are also often used in research. Questions relating to pain, symptoms, emotional needs and family concerns are consistently considered the most useful and important in palliative patient reported outcome measures (PROMs). [ABSTRACT FROM AUTHOR]

OBJECTIVE: Recent legal changes in Germany make non-compliance with advance directives (ADs) a criminal offence. This article assesses the evidence on attitudes towards, use of, and physician compliance with ADs in Germany. METHODS: Critical review: studies on ADs, identified from a systematic review of culture and end-of-life care in Germany (11 electronic databases, 3 journals, reference lists, and grey literature), were included. An interpretative synthesis of findings revealed cross-cutting themes. RESULTS: Thirty-two studies (1996-2009) were identified. Key themes were: awareness; utilization; compliance; and bindingness of ADs. There was a positive trend between awareness of ADs and study publication date. Use varied between patient groups (0.3-62%) and was low amongst the general population (2.5-10%). Fears about ADs' purpose and possible abuse were identified. Physician discomfort in discussing ADs and non-compliance were reported. Physicians preferred legally binding ADs, though conflicting results were reported for patients' desired level of bindingness. CONCLUSION: Although there is increasing awareness of ADs in Germany, there remains low use, poor communication, fears of abuse, some non-compliance and contradictory evidence regarding desired bindingness. PRACTICAL IMPLICATIONS: Although legal changes will hopefully improve compliance, low awareness, communication difficulties and uncertainties surrounding ADs must be addressed if use is to increase. [ABSTRACT FROM AUTHOR]

Background: To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers.Material and Methods: A questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet.Results: Invited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ≤ 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise.Conclusions: Most research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration. [ABSTRACT FROM AUTHOR]

Intractable breathlessness is the most common and distressing symptom in far-advanced cardiopulmonary disease. It affects millions of people world-wide. Despite advances in research over recent years there are still many unresolved questions regarding the pathophysiology and aetiology of breathlessness as well as the best management options. At an international meeting in London, researchers discussed how to improve and extend breathlessness research. Topics ranged from qualitative through to biomedical research and included: (i) the aetiology of breathlessness in cancer and its relation to deconditioning; (ii) the personal experience of breathlessness and social effects of chronic obstructive pulmonary disease (COPD); (iii) the measurement of breathlessness; (iv) the use of grey literature; (v) the latest developments in functional brain imaging (fMRI); and (vi) the effects of a breathlessness intervention service (BIS) to help patients cope with their breathlessness. Various areas for further research were identified such as understanding the genesis of breathlessness, the role of pulmonary rehabilitation in cancer patients and the need for functional imaging studies in patients with breathlessness. [ABSTRACT FROM AUTHOR]