European Intersectorial & Multi-disciplinary Palliative Care Research Training (EURO IMPACT)

EURO IMPACT, European Intersectorial and Multidisciplinary Palliative Care Research Training, is funded by the European Union Seventh Framework Programme (FP7/2007-2013, under grant agreement N° 264697).

While international research on palliative care has begun to develop over the past decades, it has not kept pace with the growing demand for high quality care. To meet the societal challenges accompanying the dramatic increase of patients facing the need for good palliative care in the forthcoming decades, there is an urgent need for enhanced collaborative research training in palliative care. This generation of researchers and the next is to be provided with the best possible skills to improve evidence based palliative care and influence palliative care policies at national and international level.
EURO IMPACT aims to develop a multi-disciplinary, multi-professional and intersectorial educational and research training framework in Europe aimed at monitoring and improving the quality of palliative care in Europe.

EURO IMPACT will develop a broad-based multi-disciplinary palliative care research training that will train researchers in mastering scientific skills to describe palliative care and its quality across Europe and identify and develop tools to improve it. 

EURO IMPACT is a Marie Curie Initial Training Network funded under Framework Programme 7 of the European Commission. With 11 partners from universities, socio-economic and private partners and several European umbrella organisations all at the forefront of palliative research and representing a wide spectrum of disciplines and professions.

EURO IMPACT is currently training 12 junior and 4 experienced researchers from a wide range of EU countries. On-the-job training will be supplemented with structured courses concerning palliative care research and network-wide trainings on multidisciplinarity, ethics, cross-national research and societal dissemination. EURO IMPACT will bridge the gap between research institutes, multiple disciplines and different sectors and enhance cross-fertilization of research activities leading to a reduction of fragmentation on a topic of great EU relevance. As a result, EURO IMPACT will build the basis for the further development of an EU platform for palliative care PhD research training and increase the international mobility of palliative care researchers across Europe.

For more information download the Project overview or visit the project website: www.euro-impact.eu

International Place of Death study (IPoD)

IPoD is an international study examining cross-national patterns in place of death using death certificate data.

Death certificate data provide a unique opportunity for crossnational studying and monitoring of place of death. In the 2003 Dying Well in Europe study all partners negotiated a dataset containing all deaths over one year with their national/regional administration of mortality statistics, including information about place of death as well as a number of clinical, sociodemographic, residential and healthcare system factors identified in the relevant literature. This dataset resulted in a number of national and international comparative papers.

It is the aim of the International Place Of Death (IPD) Study to replicate the Dying Well in Europe study for all deaths in 2008 and to include more countries, both European and non- European.

Goals of the study:

• to collect death certificate data for mortality for a full year (preferably 2008) in several countries from different continents, and merge these data into one common file

• to examine and explain cross national differences and similarities in place of death for a number of specific patient groups (eg cancer patients, neurological patients, older
patients, rural patients, etc.)

• to examine changes in place of death between 2003 and 2008 in the countries included in the Dying Well Study

• to assist researchers and policy makers who want to use the dataset or parts of the dataset to answer specific research/ policy questions

• to explore what additional clinical data on deaths can be obtained.

The study will collect and integrate death certificate data from the following countries:
Austria, Belgium,  Denmark,  England,  France,  Georgia,  Germany,  Italy,  Norway,  Portugal,  Scotland,  the Netherlands,  Spain, Sweden, Switzerland, Wales
Canada, USA,
New Zealand, Australia (Victoria),
Japan, Taiwan,
Argentina, Mexico

For information about the study, please contact Joachim Cohen: joachim.cohen@vub.ac.be

NEED_IT (Needs Assessment on Information Transfer in Eastern Europe and Central Asia)

Palliative care has been developing in Western Europe for about 45 years, whereas in the countries of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS) palliative care development started later and is more complicated. There is still a lack of comprehensive information in many of these countries which inhibits palliative care development. Access to up-to-date information and communication with leading European clinics and colleagues are restricted due to financial problems and language barriers. The information gap also includes a lack of information on ongoing activities, such as conferences, training courses and other educational activities.

To ensure that new resources will match the needs of the users, the EAPC is undertaking a survey on palliative care information needs in 28 target countries in CEE and CIS (supported by the Open Society Foundations). The aim of this survey is to assess the information needs of specialists involved in palliative/hospice care in the target region. Information needs are being assessed with a combination of quantitative and qualitative methods. A self-reporting survey aims to reach a broad range of professionals involved in palliative care. The survey is being performed in collaboration with the national associations. Interviews and focus groups will be undertaken with selected representatives in order to get in-depth information and a more profound understanding of the national backgrounds and the potential barriers to information access.

The key achievements of NEED_IT project since the start of the project are:

- The creation of a database with national key contacts in the 28 target countries

- The development of a survey tool for the assessment of information needs in palliative care

- The invitation of the national key contacts to collaborate with the survey and assist the research group with the translation of the questionnaire in their own language and with the distribution of the survey in their countries.

- The results of the survey will allow for a targeted planning of the information provision and dissemination strategies to support further palliative care development in CEE and CIS.

- To contribute to this study, please contact Saskia Jünger (saskia.juenger@ukb.uni-bonn.de).

ATOME (Access to Opioid Medication in Europe)

The Access to Opioid Medication in Europe (ATOME) project aims to improve access to opioids across Europe. A consortium of academic institutions and public health organisations is working to help governments, particularly in Eastern Europe, identify and remove barriers that prevent people from accessing medicines that could improve end of life care, alleviate debilitating pain and treat heroin dependence. The ATOME project was launched in December 2009 in Aachen, Germany, and is co-led by the University of Aachen, Lancaster University (UK), and the World Health Organization (WHO). The overall goal of this project is to undertake applied research into the legal, administrative and organisational barriers that impede access to opioid medicines for moderate to severe pain and for the treatment of opioid dependence in 12 European countries. There are three major research tasks of the ATOME project:

- A Delphi consensus process for the revision of the WHO Policy Guidelines for Controlled Substances (http://who.int/medicines/areas/quality_safety/guide_nocp_sanend/en/index.html)

- An analysis of the national legislations in the target countries for the identification of legal barriers to the availability and accessibility of opioids and

- A national situation analysis in order to identify health policy barriers to the availability and accessibility of opioids.

- The key achievements of ATOME project since the start of the project are:

- http://who.int/medicines/areas/quality_safety/guide_nocp_sanend/en/index.html creation of a project website with information about the project, barriers to opioid availability and individual information about the countries that the ATOME project focuses on (www.atome-project.eu/).

- The publication of the new WHO Policy Guidelines for Controlled Substances.

- The building of country teams in the 12 target countries each consisting of six acknowledged representatives of the national governments and professional associations in the areas of substance control, legislation, palliative care, harm reduction and public health.

- The realisation of a training workshop for lawyers from the 12 target countries and additional neighbouring countries in Eastern Europe focusing on awareness and knowledge about legal barriers to opioid availability - an important preparation of the national legislation analysis,

- The outcome of the research undertaken in the 12 European countries will result in country reports including concrete recommendations for legislative changes. These reports will be presented to relevant ministries, national organisations and health-care professionals in the 12 countries.

For more information, please visit www.atome-project.eu or contact Saskia Jünger (saskia.juenger@ukb.uni-bonn.de).

The UNBIASED study (UK Netherlands Belgium International Sedation Study)

A significant minority of dying people experience refractory symptoms or extreme distress unresponsive to conventional therapies. In such circumstances, sedation may be used to decrease or remove consciousness until death occurs. This practice is described in a variety of ways, including: ‘palliative sedation’, ‘terminal sedation’, ‘continuous deep sedation until death’, ‘proportionate sedation’ or ‘palliative sedation to unconsciousness’. Surveys show large unexplained variation in incidence of sedation at the end of life across countries and care settings and there are ethical concerns about the use, intentions, risks and significance of the practice in palliative care. There are also questions about how to explain international variation in the use of the practice.

The UNBIASED study (UK Netherlands Belgium International Sedation Study) comprises three linked studies with separate funding sources in the UK, Belgium and the Netherlands. We have funding from the Economic and Social Research Council (UK), Research Foundation Flanders (BE), the Flemish Cancer Association (BE), the Special Research Funds of the University of Ghent (BE), Netherlands Organisation for Scientific Research (NL) and the Netherlands Organisation for Health Research and Development (NL).

The aims of the study are to explore decision-making surrounding the application of continuous sedation until death in contemporary clinical practice, and to understand the experiences of clinical staff and decedents’ informal caregivers of the use of continuous sedation until death and their perceptions of its contribution to the dying process.

The study protocol and details of the study collaborators can be accessed via BMC Palliative Care http://www.biomedcentral.com/1472-684X/10/5

The study is in progress. For further information please contact:

Jane Seymour

Sue Ryder Care Professor of Palliative and End of Life Studies

University of Nottingham, UK

Jane.seymour@nottingham.ac.uk

00 44 (0) 115 8231202

PRC/EAPC RN study: The European Palliative Care Symptom Study

Palliative care patients are heterogeneous. Evidence based knowledge about the patients and their symptoms may improve clinical practice. To achieve this, an accurate description of the population is needed. Until now, most research on palliative care patients has been conducted with cross-sectional study designs. To gain better understanding on how symptoms, functional status and response to treatment fluctuate during the disease trajectory, a longitudinal multicentre study is planned. Patient reported outcomes, clinical data and biological material will be collected. Principle Investigator (PI) is Marianne Jensen Hjermstad (m.j.hjermstad@medisin.uio.no).

Read more about the study here.

PRC/EAPC RN study: Multimodal Cancer Cachexia Intervention Study

Progress in the understanding and treatment of cancer cachexia has been slow. This study is planned as a prospective phase III randomised multicenter clinical trial. The aim of the study is to assess the efficacy and feasibility of a multimodal intervention on cancer cachexia with the focus on nutritional support, exercise and anti-inflammatory treatment. PIs in this study are Ken Fearon and Vickie Baracos. To contribute to this study, please contact Tora S Solheim (tora.l.skeidsvoll@ntnu.no).

PRC/EAPC RN study: Intrathecal Local Anesthetics and Opioids for Cancer Pain

Intrathecal local anesthetics (LA) and opioids are in some centers used for treatment of severe cancer pain. An EPCRC initiated systematic review showed that the available evidence related to this therapy is very limited. Therefore, the PRC has started to develop a protocol for a randomized controlled study investigating the efficacy of intrathecal LA and opioids.

To contribute to this study, please contact Per Sjøgren (per.sjoegren@rh.regionh.dk) or Pål Klepstad (pal.klepstad@ntnu.no). 

PRC/EAPC RN study: RCT Comparing the Analgesic Efficacy in Cancer Patients with Moderate/Severe Pain

The aim of this longitudinal RCT is to evaluate and to compare the performance of four therapeutic strategies based on the use of four strong opioids (fentanyl, oxycodone, buprenorphine vs morphine) in cancer patients, in terms of analgesic efficacy, dose escalation, need of rescue/adjuvant co-treatments and need of switch. The clinical results will be related to genetic profiles of patients based on genome-wide analysis.

This RCT is lead by the Mario Negri Institute, Milan. To contribute please contact PI Oscar Corli (oscar.corli@marionegri.it).

PRC/EAPC RN study: RCT of Two Step versus Three Step Analgesic Ladder for Cancer Pain Control

The three step WHO analgesic ladder has been key to cancer pain control world-wide, however the role of Step two (weak opioids) has been questioned. A delay in achieving pain control has been identified in cohort studies and in a pilot RCT of a  two step versus three step ladder. This study aims to explore whether a  two step approach achieves pain control faster but without an excess in opioid toxicity, over a three step approach. To contribute to this study, please contact PI Marie Fallon (mfallon@staffmail.ed.ac.uk).

PRC/EAPC RN study: Nasal Fentanyl For Patient Controlled Treatment of Pain in Cancer

This is a research programme going from phase I to phase III to investigate whether cancer pain can be adequately controlled by self administered nasal fentanyl on demand. Thus, this programme challenges the non-proven concept that cancer pain is stable and therefore requires an around the clock fixed dose regimen. To contribute to this study, please contact PI Ola Dale (ola.dale@ntnu.no) or Stein Kaasa (stein.kaasa@ntnu.no).

European Palliative Care Research Collaborative (EPCRC)

The European Palliative Care Research Collaborative (EPCRC) is the first major palliative care project within the European Commision’s Framework Programmes. The work includes identification of genetic factors, and development of classification systems, assessment tools and guidelines for three major symptoms and conditions. More…x

European Pharmacogenetic Opioid Study (EPOS)

The study has included 2294 cancer patients treated with opioids for moderate or severe pain; the patients are recruited from 17 centres from 11 European countries. Analysis of the data are initiated and the first publication will be submitted this year. More…

PRISMA: Reflecting the positive diversities of European priorities for research and measurements in end of life care

PRISMA is working collaboratively to identify cultural differences in end of life care, establish a collaborative research agenda informed by public and clinical priorities, and draw together best practice and resources for quality measurement across Europe. More…

PRISMA Work package 3: Clinical Research Priorities in End-of-Life Care

This WP is about to close a pan-European survey on End-of-Life Care Research in Europe. So far they have received more than 100 responses from a total of 36 European countries. The results will be elaborated in an international workshop to outline a future research agenda. More…