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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
Download
the pdf file
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update
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 (pal.klepstad@ntnu.no),
Pain and Palliation Research Group, Norwegian University of
Science and Technology.
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pdf file
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 co–ordinator
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 co–ordinated 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
hospital–based 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 cross–sectional '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 anti–cancer therapies.
Publication
Preliminary data from the first round was presented during
the Berlin conference, 7–10 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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