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Supportive Care in Cancer

, 16:1397 | Cite as

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

  • Clare WhiteEmail author
  • Kristen Gilshenan
  • Janet Hardy
Original Article

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.

Keywords

Gatekeeping Randomised controlled trials Healthcare professionals Palliative Attitudes 

Notes

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.

References

  1. 1.
    Aoun S, Kristjanson L (2005) Challenging the framework for evidence in palliative care research. Palliat Med 19:461–465PubMedCrossRefGoogle Scholar
  2. 2.
    Barnes S, Gott M, Payne S, Parker C, Seamark D, Gariballa S, Small N (2005) Recruiting older people into a large, community-based study of heart failure. Chronic Illn 1:321–329PubMedGoogle Scholar
  3. 3.
    Benson A, Pregler J, Bean J et al (1991) Oncologists’ reluctance to accrue patients onto clinical trials. An Illinois Cancer Centre study. J Clin Oncol 9:2067–2075PubMedGoogle Scholar
  4. 4.
    Bradburn J, Maher J (2005) User and carer participation in research in palliative care. Palliat Med 19:91–92PubMedCrossRefGoogle Scholar
  5. 5.
    Breen A, Carrington M, Collier R, Vogel S (2000) Communication between general and manipulative practitioners: a survey. Complement Ther Med 8:8–14PubMedGoogle Scholar
  6. 6.
    Cohen J (1988) Statistical power analysis for the behavioural sciences, (2nd edn). Lawrence Erlbaum, Hillsdale, New JerseyGoogle Scholar
  7. 7.
    deRaeve L (1994) Ethical issues in palliative care research. Palliat Med 8:298–305CrossRefGoogle Scholar
  8. 8.
    Eiser N, Denman W, West C, Luce P (1991) Oral diamorphine: lack of effect on dyspnoea and exercise tolerance in the “pink puffer” syndrome. Eur Respir J 4:926–931PubMedGoogle Scholar
  9. 9.
    Ellis P (2000) Attitudes towards and participation in randomised clinical trials in oncology: a review of the literature. Ann Oncol 11:939–945PubMedCrossRefGoogle Scholar
  10. 10.
    Fallowfield L (1995) Can we improve the professional and personal fulfilment of doctors in cancer medicine? Br J Cancer 71:1132–1133PubMedGoogle Scholar
  11. 11.
    Fallowfield L, Ratcliffe D, Souhami R (1997) Clinicians’ attitudes to clinical trials of cancer therapy. Eur J Cancer 33:2221–2229PubMedCrossRefGoogle Scholar
  12. 12.
    Fayers P, Jordhoy M, Kaasa S (2002) Cluster-randomized trials. Palliat Med 16:69–70PubMedCrossRefGoogle Scholar
  13. 13.
    Grande G, Todd C (2000) Why are trials in palliative care so difficult? Palliat Med 14:69–74PubMedCrossRefGoogle Scholar
  14. 14.
    Gurwitz J, Guadagnoli E, Landrum M, Silliman R, Wolf R, Weeks J (2001) The treating physician as active gatekeeper in the recruitment of research subjects. Med Care 39:1339–1344PubMedCrossRefGoogle Scholar
  15. 15.
    Hardy J (1997) Placebo-controlled trials in palliative care: the argument for. Palliat Med 11:415–418PubMedCrossRefGoogle Scholar
  16. 16.
    Harrison R, Cock D, Hobbs F, Jones M, Allan T, Wilson S, Tobias R (2000) European survey of primary care physician perceptions on heart failure diagnosis and management (Euro-HF). Eur Heart J 21:1877–1887CrossRefGoogle Scholar
  17. 17.
    Hawken S (2005) Overseas-trained doctors’ evaluation of a New Zealand course in professional development. N Z Med J 118:U1584PubMedGoogle Scholar
  18. 18.
    Henderson M, Addington-Hall J, Hotopf M (2005) The willingness of palliative care patients to participate in research. Journal of Pain and Symptom Management 29:116–118PubMedCrossRefGoogle Scholar
  19. 19.
    Kendall M, Harris F, Boyd K, Sheikh A, Murray S, Brown D, Mallinson I, Kearney N, Worth A (2007) Key challenges and ways forward in researching the “good death”: qualitative in-depth interview and focus group study. BMJ 334:521PubMedCrossRefGoogle Scholar
  20. 20.
    Kirkham S, Abel J (1997) Placebo-controlled trials in palliative care: the argument against. Palliat Med 11:489–492PubMedCrossRefGoogle Scholar
  21. 21.
    Leach M (2003) Barriers to conducting randomised controlled trials: lessons learnt from the Horsechestnut and Venous Leg Ulcer Trial (HAVLUT). Contemp Nurse 15:37–47PubMedGoogle Scholar
  22. 22.
    Ling J, Rees E, Hardy J (2000) What influences participation in clinical trials in palliative care in a cancer centre? Eur J Cancer 36:621–626PubMedCrossRefGoogle Scholar
  23. 23.
    Mackillop W, Palmer M, O’Sullivan B, Ward G, Steele I, Dotsikas G (1989) Clinical trials in cancer: the role of surrogate patients in defining what constitutes an ethically acceptable clinical experiment. Br J Cancer 59:388–395PubMedGoogle Scholar
  24. 24.
    Mazzocato C, Sweeney C, Bruera E (2001) Clinical research in palliative care: patient populations, symptoms, interventions and endpoints. Palliat Med 15:163–168PubMedCrossRefGoogle Scholar
  25. 25.
    Meslin E (2001) The recruitment of research participants and the role of the treating physician. Med Care 39:1270–1272PubMedCrossRefGoogle Scholar
  26. 26.
    Mitchell G, Abernethy A (2005) Investigators of the Queensland Case Conferences Trial. Palliative Care Trial. A comparison of methodologies from two longitudinal community-based randomized controlled trials of similar interventions in palliative care: what worked and what did not? J Palliat Med 8:1226–1237PubMedCrossRefGoogle Scholar
  27. 27.
    Murphy E, Spiegal N, Kinmonth A (1992) ‘Will you help me with my research?’ Gaining access to primary care settings and subjects. Br J Gen Pract 42:162–165PubMedGoogle Scholar
  28. 28.
    Palter S (1996) Ethics of clinical trials. Semin Reprod Endocrinol 14:85–92PubMedCrossRefGoogle Scholar
  29. 29.
    Peto V, Coulter A, Bond A (1993) Factors affecting general practitioners’ recruitment of patients into a prospective study. Fam Pract 10:207–211PubMedCrossRefGoogle Scholar
  30. 30.
    Piggott M, McGee H, Feuer D (2004) Has CONSORT improved the reporting of randomized controlled trials in the palliative care literature? A systematic review. Palliat Med 18:32–38PubMedCrossRefGoogle Scholar
  31. 31.
    Rinck G, van den Bos G, Kleijnen J, de Haes H, Schade E, Veenhof C (1997) Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol 15:1697–1707PubMedGoogle Scholar
  32. 32.
    Ross C, Cornbleet M (2003) Attitudes of patients and staff to research in a specialist palliative care unit. Palliat Med 17:491–497PubMedCrossRefGoogle Scholar
  33. 33.
    Shelby-James T, Abernethy A, Currow D (2006) Evidence in palliative care research: how should it be gathered? Med J Aust 184:196–197PubMedGoogle Scholar
  34. 34.
    Slevin M, Mossman J, Bowling A, Leonard R, Steward W, Harper P, Mcmurray M, Thatcher N (1995) Volunteers or victims: patients’ views of randomised cancer clinical trials. Br J Cancer 71:1270–1274PubMedGoogle Scholar
  35. 35.
    Smale N, Rhodes P (2000) Too ill to talk: user involvement in palliative care. Routledge, LondonGoogle Scholar
  36. 36.
    Steinhauser K, Clipp E, McNeilly M, Christakis N, McIntyre L, Tulsky J (2000) In search of a good death: observations of patients, families, and providers. Ann Intern Med 132:825–832PubMedGoogle Scholar
  37. 37.
    Tannock I (1995) The recruitment of patients into clinical trials. Br J Cancer 71:1134–1135PubMedGoogle Scholar
  38. 38.
    Taylor K, Margolese R, Soskolne C (1984) Physicians reasons for not entering eligible patients in a randomized clinical trial of surgery for breast cancer. N Engl J Med 310:1363–1367PubMedGoogle Scholar
  39. 39.
    Westcombe A, Gambles M, Wilkinson S, Barnes K, Fellowes D, Maher E, Young T, Love S, Lucey R, Cubbin S, Ramirez A (2003) Learning the hard way! Setting up an RCT of aromatherapy massage for patients with advanced cancer. Palliat Med 17:300–307PubMedCrossRefGoogle Scholar
  40. 40.
    White C, Charles M, Hardy J (2007) Abstract 140—a cross-sectional, consecutive patient survey of the views of cancer patients and their relatives towards randomized controlled trials in palliative care, conference booklet. European Association of Palliative Care, BudapestGoogle Scholar

Copyright information

© Springer-Verlag 2008

Authors and Affiliations

  1. 1.Palliative Medicine, Mater Health ServicesBrisbaneAustralia
  2. 2.Northern Ireland HospiceBelfastNorthern Ireland
  3. 3.Department of Palliative Care, Mater Health ServicesBrisbaneAustralia
  4. 4.Mater Research Support Centre, Mater Health ServicesBrisbaneAustralia

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