A pan-European survey of research in end-of-life cancer care.
BACKGROUND
To date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers.


METHODS
A questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet.


RESULTS
Invited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ≤ 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise.


CONCLUSIONS
Most research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.
Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology, 7006, Trondheim, Norway. katrin.sigurdardottir@haraldsplass.no
Katrin Ruth
KR
Sigurdardottir
Dagny Faksvåg
DF
Haugen
Claudia
C
Bausewein
Irene J
IJ
Higginson
Richard
R
Harding
Jan Henrik
JH
Rosland
Stein
S
Kaasa
D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D005060:Europe; D005260:Female; D006801:Humans; D020407:Internet; D055811:Journal Impact Factor; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010166:Palliative Care / Q000379:methods*; D010506:Periodicals as Topic / Q000706:statistics & numerical data; D012106:Research / Q000706:statistics & numerical data*; D012107:Research Design / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000379:methods*