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updated:5 April 2007
Research projects
Validation of a consciousness level scale in palliative care 
Introduction
A large percentage of palliative care patients undergo, temporary or definitive, alterations of their consciousness level. This can be due to the involvement of the central nervous system by the disease, to metabolic alterations, to infections, to medication or a combination of these factors. When due to medication the level of consciousness can be affected intentionally or not. When intentional the action can be called palliative sedation.
Sedation in palliative care is a very important topic. It is being discussed for more than a decade. More recently, Cater defined sedation as “the intention to deliberately induce and maintain deep sleep, but not deliberately causing death, in very specific circumstances…”. However, the objective is the control of suffering (physical or psychological symptoms, existential distress, etc) not the level of sedation. So, the deepness of sedation should be the necessary to control acceptably the cause of suffering which cannot be controlled in other ways.
There is not any scale assessed for palliative care to measure the level of consciousness. The absence of such a scale is one of the reasons why data from studies, such as those that deal with sedation, are difficult to compare. Therefore, a reliable consciousness level scale could improve communication between the professionals making easier the comparison of data from different studies, and be useful to clinical practice and research.
In a meeting of the Research Steering Committee of the EAPC it was agreed to make a review of the literature and then to design a scale of the consciousness level to be used in palliative care. It was also agreed that the scale should be translated and assessed in various languages.
Palliative Assessment Tool –computerized – PAT-C
Collaboration of the EAPC Research Network and Symptom Management and Palliation Research Group, Norwegian University of Science and Technology
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European Pharmacogenetic Opioid Study - EPOS
European Pharmacogenetic Opioid Study (EPOS)
The principal objective of the EPOS study is to examine clinical symptoms, pharmacogenetics and pharmacology related to the use of opioids in order to improve the scientific basis of better individual tailored pain treatment.
The EPOS study represents a translational research project with combined efforts from clinical researchers, pharmacological researchers and basic researchers. The study will include 3000 cancer patients treated with opioids for moderate or severe pain. The study recruits patients from 10 countries.
Per March 2007 The EPOS study includes 16 centers throughout Europe and has included about 1700 patients.
The work on extracting DNA from samples and pharmacological analyses of opioid serum concentrations has started. Several research projects using the clinical and laboratory data obtained in EPOS are planned or under development. The international cooperation is facilitated by the participation in the study by the Research Steering Committee of the European Association for Palliative Care. The study is headed by the EPOS steering committee. The steering committee includes the principal investigator, head of pharmacological laboratory, head of genetic laboratory and one representative from each participating centre. All use of data, use of results from analyses, and use of stored blood samples will be decided by the study steering committee.
The Principle investigator is Associate Professor Pål Klepstad (), Pain and Palliation Research Group, Norwegian University of Science and Technology.
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European Community : Expressions of Interest
The Research Network has participated in two Expressions of Interest (EIO) presented to the European Community in 2002 The Expression of Interests are not project applications, but organisations were given the opportunity to express what they thought should be priority topics in the new EU 6th Framework Research Programme.
At the Resarch Forum in Lyon Giovanni Gambassi from Università Cattolica in Rome presented a preliminary draft of the Project PAIN-QUAKE to the RSC. Following the core group of investigators met at the Division of Rehabilitation and Palliative Care of the National Cancer Institute, in Milan.
The Integrated project had the following objectives: to improve the standards of pain control among elderly patients with cancer, thereby improving quality of life for millions of people.
It is proposed that this can be achieved with the following intermediate steps:
- encourage adoption of evidence-based, clinical practice guideline
- design, implement and validate improved and innovative intervention strategies
- translate pharmacy-genomic knowledge about analgesic effect into application for novel drugs discovery, and modelling of new clinical-decision support system.
It proposed to adopt a strategic intervention combining the adoption of a last-generation comprehensive geriatric assessment instrument (complemented by a pain scale and additional clinical, pharmacological and biochemical data), a decision support system with embedded the most updated clinical practice guidelines, a technological support that would make them easily available, and an educational intervention. In addition, genomic analyses in those patients with inadequate or no response to opioids will be used to inform new and improved guidelines, but also to stimulate novel drugs discovery and health care planning at large.
The second Expression had the title Terminal Care Allocating Time, Services and Money
It can be viewed at: http://eoi.cordis.lu/dsp_details.cfm?ID=36488
Sub-Thematic Priority most relevant to the topic:
1.1.7.i Knowledge-based Society and social cohesion Other relevant Sub-Thematic Priorities:
1.1.7 Citizens and Governance in a Knowledge-based society
Both Expressions had not been selected among the high priorities. The analysis of the Expression of Interest can be downloaded from : http://www.cordis.lu/fp6/eoi-analysis.htm
The 6th Framework Programme was launched at the end of last year. It was supposed to be formed by the EOIs, but is formulated in a very broad way. Nor Pain quake neither Terminal care are specifically mentioned. The deadline of the first call for proposals is 15 April 2002 deadline no applications were made.
Cross-sectional survey
The present project is the first empirical multicentre study organised by the EAPC ResNet.
The study includes 21 countries, all the 15 member states of the European Union as well as Norway, Switzerland, Iceland, Israel, Romania and Cyprus. For each country, one national coordinator recruited five (if possible) to a maximum of 10 participating centres to the study. A network of 142 centres was set up.
The study was coordinated by a core group of four Steering Committee members: Stein Kaasa, Geoffrey Hanks, Nathan Cherny and Franco De Conno.
All the organisation, distribution of information, dispatching of documents, collecting data and drawing up of data bases was carried out by Karin Torvik, the data manager of the Unit for Applied Clinical Research, Faculty of Medicine, Trondheim, Norway. The entire study was carried out without any external financial support.
The questionnaires were completed in all countries in the English language, and a French translation of the questionnaire was available.
The main objectives of the study are:
- To identify the patient population of specialist palliative care services in terms of demographic data, diagnostic groups, treatment, social circumstances and performance status
- To provide detailed information on the use of strong opioid analgesics and some other key drugs by specialist palliative care services
- To identify a network of palliative care services across Europe able to participate in collaborative research.
Inclusion criteria
The study includes 3,088 patients, both inpatients and outpatients under the care of palliative care services in the participating centres on one specific day during week 23. Each centre may choose the day for registration during week 23.
Due to different reasons, Israel and the Netherlands collected data during week 25, France during week 26 and the UK, Greece, Ireland and Luxembourg during week 40 (second round).
In countries with less than ten specialist palliative care services, all centres were included. In countries with more than ten specialist services, the aim was to obtain a representative sample based upon an equal distribution of type of centres in the country. For selecting representative centres, the following guide was used:
- Cancer hospital
- General hospital
- Hospice
- Outpatient hospitalbased service (ambulatory service)
- Day care
- Home care (specialist advisory service)
- Home care (extended nursing care, or 'hospice at home')
- Other
Method
This study is a descriptive crosssectional 'quality assurance' survey. All participating centres completed a questionnaire (only one per centre) describing the nature of their service.
On the given day of the study, the participating centres completed a detailed questionnaire on every single patient currently under care. The patient survey includes:
- Demographic data: age, sex, marital status, home circumstances and diagnosis
- Palliative care data: date of referral to the palliative service, place of palliative care delivery, involved team members, anticipated life expectancy, nutrition, alertness, mobility and goals of care
- Current problems: symptom severity and active problems
- Therapeutics: medications, invasive analgesic approaches, invasive palliative approaches and use of alternative/complementary medicines.
A specific subsection was incorporated for patients with cancer. This includes details of specific diagnosis, stage of disease, sites of known metastases and current anticancer therapies.
Publication
Preliminary data from the first round was presented during the Berlin conference, 710 December 2000 and at the session of the Research Network during the 7th Congress of the EAPC, Palermo, Italy, April 2001.
Several publications will be finalised by the end of 2002. One draft for publication has been circulated to the writing committee and we are in the process of analysing the datasets for further 3 papers.
Beginning March the National co-ordinators will receive the national data sets. No restrictions for the use for national publications will be given. This will give the possibility to the national co-ordinators and the centres to acknowledge all the persons who have collaborated in the data collection for the survey.The EAPC and the Research Network should be acknowledged in eventual publications.
The centres will receive an information about the state of the art and that all the centre co-ordinators will be acknowledged in the papers published by the study co-ordinators.
The results will be discussed in detail at the Second Congress on Research Lyon May 2002.
The Centre Co-ordinators of the cross-sectional survey
The following centre co-ordinators and the centres have agreed that their names will be published on our site.
AUSTRIA
Dr Johann P Zoidl, Palliative Care Unit, Krankenhaus Barmherzige Schwestern, Linz
BELGIUM
Docteur Trudie Van Iersel, AZ St Jan Brugge, Network Palliative Care, North West-Flanders, Bruges
CYPRUS
Mrs Jane Kakas, Home Care Services, Cyprus Association of Cancer Patients & Friends, Nicosia
FINLAND
Dr Tiina Saarto, Palliative Care Unit, Dept. of Oncology, Helsinki University Hospital, Helsinki
FRANCE
Docteur Benoît Burucoa, Service de Soins Palliatifs, Groupe Hosptalier Saint André CHU de Bordeaux, Bordeaux-Cedex
Docteur Pascal Vinant, Unité mobile de Soins Palliatifs, CHU COCHIN, Paris
GERMANY
Dr Marianne Kloke, Interdisziplinaire Einrichtung zur Schmerztherapie, Universitatsklinik, Essen
Dr H Christof Müller-Busch, Interdisziplinäre Palliativstation Gemeinschaftskrankenhaus, Havelhöhe Berlin
UK
Dr JM Dale, Macmillan palliative care unit, Worcestershire Community Hospital NHS Trust, Worcester
Dr Alison L Dawn, Palliative Care Team, Leeds Teaching Hospital Trust, Leeds
Dr Christopher Higgs, Dorothy House Hospice Care, Wiltshire
Dr Mary Nugent, Medical Director, St Luke's Hospice, Plymouth
Professor John Welsh, Division of Palliative Medicine, Glasgow University, Glasgow, Scotland
Dr Andrew Wilcock, Hayward House, Nottingham City Hospital, Nottingham
ICELAND
Mr Valgerdur Sigurdartóttir, The Palliative Care Unit, Liknardeild Landspitali Kopavogur, Kopavogur
Dr Gudlaug Thorsdottir, Liknareiningin K1, Landspitali Hàskolasjukrahus- Landakot, Akureyri
ITALY
Dr Roberto Bortolussi, Hospice Via di Natale, Aviano-Pordenone
Dr Oscar Corli, Terapia del Dolore e Cure Palliative, Ospedale Vittore Buzzi, Milano
SPAIN
Dr Carlos Centeno, Centro Regional de Cuidados Paliativos, Hospital Los Montalvos Salamanca
SWITZERLAND
Dr Dominique Anwar, Unité de soins palliatifs, Hôpital d'Aubonne, Aubonne
Mme Françoise Porchet, Service de la Formation Continue, CHUV Lausanne
EPCRC: Improved treatment of pain, depression and fatigue through translation research
The European Palliative Care Research Collaborative (EPCRC)
Based on the EAPC Research Network, an extended research collaborative has been established within the palliative care community in Europe. The European Palliative Care Research Collaborative (EPCRC) consists of eight participating centres in six European countries: UK (King’s College London, Bristol Haematology & Oncology Centre, and University of Edinburgh), Italy (Fondazione IRCCS Istituto Nazionale dei Tumori, Milan), Switzerland (Cantonal Hospital, St. Gallen), Germany (University Hospital Aachen), Austria (Medical University of Graz and Bender MedSystemsGmbH, Vienna), and Norway (Norwegian University of Science and Technology and Trollhetta AS, Trondheim).
Coordinated by the Pain and Palliation Research Group in Trondheim, the collaborative’s proposal was successfully evaluated in 2006 and received a 2.8 mill Euro funding from the European Commission for a 3 year period, starting from 1 November 2006.
Research areas
The research areas for the project were determined by the European Commission. The work concentrates on three major symptoms: Pain, depression, and cachexia. Control of these symptoms is pivotal for quality of life of millions of palliative care patients. Pain is one of the most common problems and the most feared symptom by many patients. Although there are several publications on the classification of pain, there is still no international consensus on how to assess or measure it. The prevalence of depression varies from 6-58% in palliative care patients, reflecting the lack of standardised validated methodology for its assessment in this patient group. Cachexia is likely to be the most important contributor to fatigue in advanced disease. Nevertheless, there is no agreed classification system or diagnostic approach to this condition.
Improving the management of these three major symptoms and conditions in cancer patients demands new knowledge through research in several areas. The research plan of the EPCRC adresses questions raised in the clinical setting by a multidisciplinary translational approach in which basic scientists and clinicians will combine human genome data, results from systematic literature reviews, and data from clinical studies into practical applications for palliative care patients. Assessment and classification of pain, depression and cachexia (fatigue) are the basis for diagnosis and subsequent treatment. By use of modern methods of molecular biology the EPCRC will increase the understanding of the role of genetic variability for pain and cachexia. European evidence-based internet guidelines will be developed by members of the EPCRC supported by an international advisory board.
Aims of the project
The overall objectives of the EPCRC are to develop novel genetic methods for prediction of opioid responses and individual variation of cachexia, methods for assessment and classification of pain, cachexia, and depression, and clinical guidelines for assessment and treatment of these three symptoms/conditions.
The aims of the project may be listed as follows:
1. To identify genes and genetic variation relevant for inter-individual variation in opioid responses and genetic variation that may identify patients at particular risk for developing cachexia.
2. To improve classification and assessment of pain, depression and cachexia by computer assisted approaches.
3. To combine the new knowledge of symptoms, genomics and assessment in an internet-based system for implementation of European evidence-based guidelines, which will include standardized assessment and individualized treatment plans for pain, depression and cachexia.
4. To develop a long lasting European Collaborative in palliative care cancer research.
Conditions for success
The work within the EPCRC is divided into five major work packages involving between 50 and 60 researchers in all. Expert groups have been formed on each symptom, with members from inside and outside the collaborative. The collaborative clearly has the opinion that this work is performed on behalf of the entire palliative care community in Europe, aiming at practical results to influence and improve patient management in daily clinical practice. To reach this aim, the collaborative is highly dependent on broad input and feedback from the palliative care community. EAPC conferences and research forums provide excellent opportunities for workshops and discussions and will be used to this end. The EPCRC is organising three workshops during the Budapest conference, and we hope for active participation from a wide range of palliative care practitioners.
The EPCRC website provides information about all parts of the project as well as options for discussion and feedback.
We encourage all readers to visit it regularly, www.epcrc.org
Dagny Faksvåg Haugen
Stein Kaasa
EPCRC Management Group, Trondheim, Norway
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