Barriers to Research in Palliative Care Barriers to Research in

EAPC Vienna 7
7-10
10 May
Session Research Methodology FC12 16:30-18:00 Hall I
Barriers to Research in Palliative Care
in Switzerland: A national survey
Strasser F, Inauen R, and palliative-ch
PD Dr.
Dr med
med. Florian Strasser,
Strasser ABHPM
Head Oncological Palliative Medicine
Dept. Internal Medicine and Palliativcenter
Cantonal Hospital St.Gallen
St Gallen
Switzerland
Research
R
h in
i palliative
lli ti care is
i
perceived as difficult and
12
challenging1,2
We are improving3,
but still a lot to do
Foto: Danke an Christine Widmer, KSSG
Citations:
0.08% Æ 0.38%
Clinical Trials: 0.17% Æ 0.82%
1: Head B, Ritchie C. Researching end-of-life
end of life care: challenges, strategies, and opportunities.
Home Healthcare Nurse 2004;22:37-44
2: Rinck GC, van den Bos GA, Kleijnen J et al. Methodologic issues in effectiveness research on
palliative cancer care: a systematic review. J Clin Oncol 1997;15:1697-1707
3: Tieman J, Sladek R, Currow D. Changes in the quantity and level of evidence of palliative and
hospice care literature: the last century. J Clin Oncol. 2008;26:5679-83
Barriers to Research in Palliative Care:
The Questionnaire (B-PC-R)
Interview auf der Palliativstation KSSG
Palliativ Care-Kurs
Kinderspital Zürich
Klinik Bircher Susenberg
Soins Palliatifs Arc Jurassien
Pflegezentrum Limmattalspital, Schlieren
Klinik La Chrysalide, La Chaux-de-Fonds
Spital Thun
Diakonissenhaus Palliativstation Spital Silo
Klinik für Allgemeine Innere Medizin,
Medizin Insels
Praxis Rotbuchstrasse 46, Zürich
Fondation Rive neuve, Villeneuve
Equipe mobile FSASD, Carouge
Zentrum Association François-Xavier Bagn
Lighthouse, Zürich
P lli ti t ti
Palliativstation,
Hô it l d'A
Hôpital
d'Aubonne
b
Palliativstation, CHUV, Lausanne
Onkologie, Bruderholzspital BL
Bethesda-Spital, Basel
Ambulatorium Onkologie, Universitätsspita
Universitätsspital Genf
Spitex Bürglen, Brügg bei Biel
Hospiz im Park, Arlesheim
Palliativ-Support, Reinach BL
Stadtspital Triemli, Zürich
Radioonkologie Palliativstation USZ
Associazione Ticinese di Cure Palliative
Hospice Ticino, Lugano
28 Interviews (14 groups
groups, 14 indivual)
74 Palliative Care Professionals
(20 Doctors,
Doctors 34 Nurses
Nurses, 7 Psychologists,
Psychologists 3
Chaplains, 6 Administrators, 4 andere)
Language: 18 German, 8 French, 2 Italian
Ad verbatim transcription, constant
p
, analysis
y
deduktiv &
comparison,
induktiv, MaxQDA for Coding
Barriers to Research in Palliative Care:
The Questionnaire (B-PC-R)
Interviews and systematic Literature review
Methodic expert for questionnaire development
Pilot-Study (Language, face-validity), n=50
Final Questionnaire
Three languages
g g
Shipment fully anonymized, Swiss Academy of
Medical Sciences,, One reminder
- Research activities & Interest
- Perceived importance of palliative care research
1.1. Perceived
patient‘s burden
of research
Barriers to Research in
Palliative Care:
The Questionnaire
5 Domains,
31 subcategories
Ethical considerations
Financial & time
expenses
p
Study design/plan &
methodology
Human ressources
Politics
Ablauf – Barriers - Survey
Responders flow
1. Phase
1681
Persons
2. Phase
3. Phase
438
Answers
444
Answers
R i d
Reminder
559
Answers
1003 / 1681: 63%
Demographics
g p
188 physicians,
h i i
618 nurses, 176 other,
th 21 nsp
71 % Women
Age: 22% < 40 years, 9% > 60 years
Language: 61% german, 32% french, 7% italian
Responders
R
d
are nott diff
differentt from
f
the
th whole
h l
population: representative
160 (e.g., 52 doctors, 71 nurses) are actively
involved in research ((last 5 y
years))
Barrierengewichtung nach Berufsgruppen (c11)
Main Barriers (from 31 subcategories)
Ethik
Zeit
Finanzen
Eth‐Komm
Pat‐Rekr
Durchführ.
Personal
interdisz ZA
and. Prior.
Sprache
Standespol
9
22
Time
3
28
32
21
31
3 10 4
23
16
5
16
22
5
29
27
12 3
6
7
24
13
4
20
4
7
21
7
0
20
40
7
Money
9
Ärzte
Pflegende
6
Andere
k.a.
Persons
60
80
Answers possible: very big,
big big,
big small,
small very small,
small not all all
Main Barriers
Lack of time (MD 35,
35 Nurse 56)
- Insufficient ear-marked research time: 85%
- Use assigned research time for clinics: 79%
Lack of money (MD 18,
18 Nurse 40)
- No research budget: 73%
- No experience writing grants: 79%
- No money for qualitative research: 83%
Lack of human ressources (MD 8, Nurse 19)
- No research environment: 81%
Other - maybe important - Barriers
Perceived patient burden of research: 52%
1/3 of doctors, 2/3 of nurses
R
Research
h iin palliative
lli ti care is
i important:
i
t t 60%
Perceived reistance of nurse to research: 49%
Professionals Priorities
Prioritize clinical work over research: 91%
Prioritize education over research: 70%
Language is a problem: 48% (MD 23%
23%, Nurse 59%)
Conclusions and next steps wished
Specific
S
ifi P
Palliative
lli ti Care
C
Research
R
h Institute
I tit t : 91%
Clear definition of Palliative Care: 73%
Support and maintain research priorities of
centers and individuals
AND
perform priorities‘ based multzentric research
(symptoms [cachexia]; advanced directives; service
development)
National research policy
Thanks to
p
palliative-ch
board and
members;;
Swiss
Academia of
Medical
Sciencies;;
international
p
partners
Contact
@
g
[email protected]
[email protected]