Top

Supportive Care in Cancer

Published in:

01-12-2008 | Original Article

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

Authors: Clare White, Kristen Gilshenan, Janet Hardy

Published in: Supportive Care in Cancer | Issue 12/2008

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.

Available only for authorised users

Aoun S, Kristjanson L (2005) Challenging the framework for evidence in palliative care research. Palliat Med 19:461–465PubMedCrossRef

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 1:321–329PubMed

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 9:2067–2075PubMed

Bradburn J, Maher J (2005) User and carer participation in research in palliative care. Palliat Med 19:91–92PubMedCrossRef

Breen A, Carrington M, Collier R, Vogel S (2000) Communication between general and manipulative practitioners: a survey. Complement Ther Med 8:8–14PubMed

Cohen J (1988) Statistical power analysis for the behavioural sciences, (2nd edn). Lawrence Erlbaum, Hillsdale, New Jersey

deRaeve L (1994) Ethical issues in palliative care research. Palliat Med 8:298–305CrossRef

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 4:926–931PubMed

Ellis P (2000) Attitudes towards and participation in randomised clinical trials in oncology: a review of the literature. Ann Oncol 11:939–945PubMedCrossRef

10.

Fallowfield L (1995) Can we improve the professional and personal fulfilment of doctors in cancer medicine? Br J Cancer 71:1132–1133PubMed

11.

Fallowfield L, Ratcliffe D, Souhami R (1997) Clinicians’ attitudes to clinical trials of cancer therapy. Eur J Cancer 33:2221–2229PubMedCrossRef

12.

Fayers P, Jordhoy M, Kaasa S (2002) Cluster-randomized trials. Palliat Med 16:69–70PubMedCrossRef

13.

Grande G, Todd C (2000) Why are trials in palliative care so difficult? Palliat Med 14:69–74PubMedCrossRef

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 39:1339–1344PubMedCrossRef

15.

Hardy J (1997) Placebo-controlled trials in palliative care: the argument for. Palliat Med 11:415–418PubMedCrossRef

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 21:1877–1887CrossRef

17.

Hawken S (2005) Overseas-trained doctors’ evaluation of a New Zealand course in professional development. N Z Med J 118:U1584PubMed

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 29:116–118PubMedCrossRef

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 334:521PubMedCrossRef

20.

Kirkham S, Abel J (1997) Placebo-controlled trials in palliative care: the argument against. Palliat Med 11:489–492PubMedCrossRef

21.

Leach M (2003) Barriers to conducting randomised controlled trials: lessons learnt from the Horsechestnut and Venous Leg Ulcer Trial (HAVLUT). Contemp Nurse 15:37–47PubMed

22.

Ling J, Rees E, Hardy J (2000) What influences participation in clinical trials in palliative care in a cancer centre? Eur J Cancer 36:621–626PubMedCrossRef

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 59:388–395PubMed

24.

Mazzocato C, Sweeney C, Bruera E (2001) Clinical research in palliative care: patient populations, symptoms, interventions and endpoints. Palliat Med 15:163–168PubMedCrossRef

25.

Meslin E (2001) The recruitment of research participants and the role of the treating physician. Med Care 39:1270–1272PubMedCrossRef

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 8:1226–1237PubMedCrossRef

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 42:162–165PubMed

28.

Palter S (1996) Ethics of clinical trials. Semin Reprod Endocrinol 14:85–92PubMedCrossRef

29.

Peto V, Coulter A, Bond A (1993) Factors affecting general practitioners’ recruitment of patients into a prospective study. Fam Pract 10:207–211PubMedCrossRef

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 18:32–38PubMedCrossRef

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 15:1697–1707PubMed

32.

Ross C, Cornbleet M (2003) Attitudes of patients and staff to research in a specialist palliative care unit. Palliat Med 17:491–497PubMedCrossRef

33.

Shelby-James T, Abernethy A, Currow D (2006) Evidence in palliative care research: how should it be gathered? Med J Aust 184:196–197PubMed

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 71:1270–1274PubMed

35.

Smale N, Rhodes P (2000) Too ill to talk: user involvement in palliative care. Routledge, London

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 132:825–832PubMed

37.

Tannock I (1995) The recruitment of patients into clinical trials. Br J Cancer 71:1134–1135PubMed

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 310:1363–1367PubMed

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 17:300–307PubMedCrossRef

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, Budapest

Title: A survey of the views of palliative care healthcare professionals towards referring cancer patients to participate in randomized controlled trials in palliative care
Authors: Clare White
Kristen Gilshenan
Janet Hardy
Publication date: 01-12-2008
Publisher: Springer-Verlag
Published in: Supportive Care in Cancer / Issue 12/2008
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-008-0441-1

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Goals of work

Materials and methods

Main results

Conclusion

Please log in to get access to this content

Other articles of this Issue 12/2008

The religiousness as a way of coping with anxiety in women with breast cancer at different disease stages

A mixed-method evaluation of nurse-led community-based supportive cancer care

The use of low-energy laser (LEL) for the prevention of chemotherapy- and/or radiotherapy-induced oral mucositis in cancer patients: results from two prospective studies

Does the occurrence of adverse life events in patients with breast cancer lead to a change in illness behaviour?

Treatment adherence and patients’ acceptance of home infusions with adenosine 5′-triphosphate (ATP) in palliative home care

Expression of CD11b/CD18 adhesion molecules on circulating phagocytes—a novel aid to diagnose infection in patients with cancer

Keynote webinar | Spotlight on antibody–drug conjugates in cancer