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A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care

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Abstract

Goals of work

Clinical trials in palliative care (PC), especially randomised controlled trials (RCTs), are notoriously difficult to complete. One perceived challenge is gatekeeping, the reluctance of some healthcare professionals (HCPs) to refer patients for research studies. This study aimed to identify the extent of gatekeeping from palliative RCTs.

Materials and methods

An anonymous questionnaire was sent to 597 HCPs with an interest in PC in Australia and New Zealand to assess their willingness to refer patients for RCTs. Respondents considered key issues that might affect their decision, documented willingness to refer to RCTs of increasing complexity in a hypothetical pain situation and documented the degree of patient inconvenience considered acceptable. Demographic data were collected.

Main results

One hundred ninety-eight questionnaires were returned (33%), 122 from doctors and 76 from other HCPs. Very few were willing to refer to complicated studies involving many extra tests and/or hospital visits. Non-medical HCPs were less interested than doctors in studies that involved randomisation, placebo controls or double-blind methodology. The majority would refer patients for non-pharmacological studies, but were less willing to refer for pharmacological studies with possible side effects. Non-medical HCPs were less willing than doctors to refer to trials that involved patient inconvenience. Two factors predicted for greater willingness to refer: previous research experience and male gender.

Conclusion

The survey revealed an unwillingness on the part of many HCPs to refer patients for RCTs in PC. It identifies trial-related factors that may encourage or discourage referral. Gatekeeping has the potential block recruitment and introduce a selection bias.

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Acknowledgements

The authors would like to thank Australia New Zealand Society of Palliative Medicine, Centre for Palliative Care Research and Education, Brisbane, Palliative Care Research Fund, Mater Health Services, Macmillan Cancer Support for funding for CW and Andrew Monington and Amy Pinkerton for data entry.

Conflict of interest statements

Clare White declares that she participated in the study design, implementation, collecting of results, analysing results, and write up and that she has seen and approved the final version. She has no conflicts of interest.

Kristen Gilshenan declares that she participated in the statistical analysis of the results and that she has seen and approved the final version. She has no conflicts of interest.

Janet Hardy declares that she participated in the study design, implementation, collecting of results, analysing results, and write up and that she has seen and approved the final version. She has no conflicts of interest.

Author information

Authors and Affiliations

  1. Palliative Medicine, Mater Health Services, Brisbane, Australia

    Clare White

  2. Northern Ireland Hospice, 74 Somerton Rd, Belfast, BT15 3LH, Northern Ireland

    Clare White

  3. Department of Palliative Care, Mater Health Services, Brisbane, Australia

    Janet Hardy

  4. Mater Research Support Centre, Mater Health Services, Brisbane, Australia

    Kristen Gilshenan

Authors
  1. Clare White
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  2. Kristen Gilshenan
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  3. Janet Hardy
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Corresponding author

Correspondence to Clare White.

Appendix 1

Appendix 1

Part A

How interested would you be in referring a palliative care patient for participation in a study if:

Table 2
Full size table

Part B

For the following section, please assume that you have a patient with pain related to their malignancy. It is currently fairly well controlled, but sometimes stops them from sleeping well at night.

Would you be willing to refer a patient to take part in a research study of a new treatment for pain in which they had a 50/50 chance of being given the items listed below (compared with standard treatment or placebo):

Table 3
Full size table

Part C

We are interested to know what degree of inconvenience you feel is reasonable for patients to undergo as part of a research trial.

‘I would be prepared to refer a patient to take part in a research trial which involved:’

Table 4
Full size table

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White, C., Gilshenan, K. & Hardy, J. A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care. Support Care Cancer 16, 1397–1405 (2008). https://doi.org/10.1007/s00520-008-0441-1

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  • DOI: https://doi.org/10.1007/s00520-008-0441-1

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