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National
research initiatives
France
Germany
Spain
Switzerland
United Kingdom
National
and regional research initiatives in Europe
The
Research Steering Committee (RSC) decided to create a section
on the site to collect and publish information about national
and regional research initiatives. For its next meeting
the RSC has invited the representatives of four groups.
The
RSC invites all EAPC members and readers to inform us about
such initiatives.
FRANCE
Commission
Recherche de la Société Française d'Accompagnement
et Soins Palliatifs
Cette
commission a été créé en Novembre
1999.
OBJECTIFS
:
- Etre
une facilitateur pour la recherche en soins palliatifs
- Renforcer
la formation à la recherche en soins palliatifs
- Soutenir
des projets de recherche
Lien
à une association nationale : la SFAP
CONTACTS
:
Secrétariat : +33 (0)1 45 75 43 86. E-mail : sfap@wanadoo.fr
Responsables
de la Commission :
Nombre
de centres participants : pas d'inscription actuellement,
mais potentiellement les adhérents de la SFAP et les
structures spécifiques de soins palliatifs (USP, EMSP).
FINANCEMENT
: Les donateurs de la SFAP, particulièrement la
Fondation de France
ACTIVITES
ET ETUDES EN COURS :
- Composition
d'un article sur l'enquête auprès des adhérents
sur la recherche en soins palliatifs :
- Organisation
d'une journée de sensibilisation à Paris le
20 octobre 2000 (80 participants)
- Préparation
de deux séminaires de formation pour les adhérents
de la SFAP:
- l'un
à Bordeaux les 29 et 30 juin 2001 sur les approches
quantitatives
- l'autre
à Paris les 26 et 27 octobre 2001 sur les approches
qualitatives
- Préparation
d'un guide d'aide à la recherche en soins palliatifs
(parution prévue au début de l'année
2002).
GERMANY
Arbeitskreis
Forschung der Deutschen Gesellschaft für Palliativmedizin
(Working group on research of the German Association for Palliative
Medicine)
Palliative
care has seen a rapid development in Germany over the last
few years, and the number of inpatient and outpatient services
has increased steadily. However, research into palliative
care still is scarce, and publications focus on cancer pain
management with few exceptions. With the increasing number
and scope of the palliative care units the discussion on quality
assurance has been raised, and research in palliative care
has been called for.
Following
the growing demand on research in palliative care a working
group has been established by the German Association for
Palliative Medicine.
The
working group had its initial meeting in 1999 and has since
formed a network for research. A workshop on research has
been organised by the working group during the German Palliative
Care Congress last year. The working group is also involved
in the development of a German core instrument for documentation
of inpatient palliative care.
Future
activities of the working group will cover several areas:
- A
training workshop on research methodology which will be
organised for the next palliative care congress
- Participants
will be informed of ongoing and planned research projects
and will be invited to participate in German and European
projects
- Finally
the working group will try to identify topics and aims for
clinical trials with high relevance for the development
of palliative care and will initiate clinical trials with
the research network on these topics.
Physicians
and non–physicians working in palliative care throughout
Germany are invited to join the network!
Contact:
Lukas Radbruch, Pain Clinic, Department of Anaesthesiology,
University of Cologne, Cologne, Germany.
Tel: +49 221 478 4884.
Fax: +49 221 478 6785.
email: Lukas.Radbruch@uni-koeln.de
website: http://www.dgpalliativmedizin.de/
SPAIN
Co–operative
Group of Catalonia for Research in Palliative Care (CATPAL)
DIRECTOR
ASSITANTS:
Dr Xavier Gómez Batiste
DIRECTOR
ASSITANTS:
Dr Albert Tuca
Ms Esther Corrales
Information
about this group was presented during the RSC meeting at the
Palermo Congress and will be updated shortly.
Switzerland
The
Working Group Research of the Swiss Society of Palliative Care
(SSPC) includes presently research interested members of the
board.
With the support of the Health Authorities a project to support
sustained development of palliative care research in Switzerland,
the Swiss Palliative Care Research Initiative, has been started.
Present
situation in Switzerland
Many palliative care professionals in Switzerland are interested
in and perform research projects. The posters and presentations
reported (Strasser F. Swiss research and service projects
reported at EAPC [Article in German, French, Italian]: Palliative-ch
2003;2:29-33, 35-39, 41-45.) and the interest of palliative
care professionals in the new prospective SIAK (Swiss Institute
of Applied Cancer Research) project group Symptom Control
and Palliative Cancer Care (Strasser F. SIAK-Project Group
«Symptom Control & Palliative Cancer Care»
Schweizer Krebsbulletin 2003;1: 11-12 and [Article in German,
Italian, French] Palliative-ch 2003;1:23-28.) (even though
it is focused on research conducted by oncologist) suggest
a reliable potential for further developing palliative care
research.
Actually the projects are mostly performed locally, the quality
of the projects is rarely of competitive quality (few articles
in peer-reviewed journals), and the projects are seldom funded
by sources other than the institutional support.
The training of palliative care professionals is not yet standardized,
efforts are currently made to develop three standardized levels
(basis, advanced, expert) of professional formation for palliative
care physicians and nurses (Reports about Bigorio (three articles,
one editorial). Palliative-ch 2003;1). Approximately less
than a dozen persons did finish during the last years foreign
masters or board certifications in palliative care. Only a
handful of persons spent 6 or more months in a foreign institution
to get training in and perform palliative care research.
Potential for multidisciplinary palliative care research
significant to improve care of patients close to end-of-life:
First step of PCRI
The main hypothesis is that the information about palliative
care researcher, their projects significant to improve care
of patients and families, and the identification of barriers
for research, will provide a strategic tool to further promote
research for these vulnerable patients.
Specific aim 1: To identify multidisciplinary professionals
having an expressed interest in palliative care research.
Specific aim 2: To identify and review projects potentially
significant to improve care of patients and relatives.
Specific aim 3: To identify barriers impeding research and
assess research potential.
The project started in the winter/spring 2004 (Strasser F.
Palliative-ch 2/2004).
Significance
of research.
The results of Purpose-Swiss-PCRI step 1 may provide information
on research capacities and research needs for patients with
advanced, incurable, and progressive diseases and their families,
relevant for the formulation of national research programs.
Contact
Florian Strasser, MD
Oncology & Palliative Medicine
Section Oncology/Haematology
Department Internal Medicine
Cantonal Hospital
Rorschacherstrasse
9007 St. Gallen
P. 071 494 11 11 (11 79)
F. 071 494 23 65
M. 079 401 58 73
Florian.Strasser@kssg.ch
and fstrasser@bluewin.ch
UNITED
KINGDOM
Palliative
Care Research Forum of Great Britain and Ireland
Information
about this group was presented during the RSC meeting at the
Palermo Congress and will be updated shortly.
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