Randomised controlled trials of palliative care - a survey of the views of advanced cancer patients and their relatives

White, C., Hardy, J., Gilshenan, K. S., Charles, M. A. and Pinkerton, C. R. (2008) Randomised controlled trials of palliative care - a survey of the views of advanced cancer patients and their relatives. European Journal of Cancer, 44 13: 1820-1828. doi:10.1016/j.ejca.2008.05.003


Author White, C.
Hardy, J.
Gilshenan, K. S.
Charles, M. A.
Pinkerton, C. R.
Title Randomised controlled trials of palliative care - a survey of the views of advanced cancer patients and their relatives
Journal name European Journal of Cancer   Check publisher's open access policy
ISSN 0959-8049
1879-0852
Publication date 2008-09-01
Year available 2008
Sub-type Article (original research)
DOI 10.1016/j.ejca.2008.05.003
Open Access Status Not yet assessed
Volume 44
Issue 13
Start page 1820
End page 1828
Total pages 9
Editor John Smyth
Place of publication Edinburgh, United Kingdom
Publisher Pergamon
Language eng
Subject 119999 Medical and Health Sciences not elsewhere classified
C1
970111 Expanding Knowledge in the Medical and Health Sciences
1110 Nursing
Abstract Purpose: To determine if patients with advanced cancer are interested in participation in palliative care research, particularly RCTs, and the importance of demographic factors in decision making. It sought relatives' views towards supporting trial entry, and assessed if demographic factors can predict participation.
Formatted abstract
Purpose

To determine if patients with advanced cancer are interested in participation in palliative care research, particularly RCTs, and the importance of demographic factors in decision making. It sought relatives’ views towards supporting trial entry, and assessed if demographic factors can predict participation.
Methods

A questionnaire was developed through multiprofessional focus groups, patient and relative interviews and pilot studies. Consecutive patients known by the palliative care service to have advanced disease were approached. Relatives of consenting patients completed a parallel survey. K-means cluster analysis was used to differentiate between those willing and unwilling to participate. Multivariate logistic regression identified demographic factors predicting willingness.
Results

One hundred and one patients and 100 relatives were included. 92% of patients would participate in studies involving simple interventions, whereas only 26% would consider studies of complex interventions. A similar pattern was observed for relative support. Over 75% of participants expressed altruistic views. Concepts of ‘randomisation’, ‘placebo-control’ and ‘blinding’ deterred about one-half. Many were prepared to complete short questionnaires, accept extra medications, investigations, hospital visits or admissions within a trial context but the possibility of side-effects was a major deterrent. Patient age was the only significant predictor of willingness to participate, with older patients less likely to participate.
Conclusion

Despite the likely absence of individual benefit, many patients appear willing to participate in palliative care research. Trial design and the possibility of side-effects proved very influential in their decision making. Clinical trials in palliative care are more likely to be successful if developed in accordance with the views of patients and their relatives.
Keyword Views
Attitudes
Patients
Relatives
Randomised controlled trials
Palliative care
Trial design
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status Non-UQ

 
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Created: Wed, 08 Apr 2009, 23:16:30 EST by Mary Herwig on behalf of School of Medicine