Recruitment challenges for end-of-life research

Journal of Hospice and Palliative Nursing

Volumn 9, Issue 2, 2007, Pages 79-85

  Williams, Anna Leila ^a  

^a YALE UNIVERSITY SCHOOL OF NURSING   (United States)

Author keywords

End of life; Methodology; Palliative care; Recruitment; Research ethics

Indexed keywords

EID: 34247629403     PISSN: 15222179     EISSN: 15390705     Source Type: Journal    
DOI: 10.1097/01.NJH.0000263529.99552.91     Document Type: Review

References (34)

1. Institute of Medicine. Approaching death: Improving care at the end of life. Washington, DC: National Academy Press; 1997.
2. National Institute of Nursing Research. Mission statement. Available at: http://ninr.nih.gov/ninr/research/diversity/mission.html. Accessed March 17, 2006.
3. National Institutes of Health. State of the Science conference statement on improving end of life care. Available at: http://consensus.nih.gov/2004/ 2004EndOfLifeCareSOS024html.htm. Accessed March 15, 2006.
4. Jordhoy MS, Kaasa S, Fayers P, et al. Challenges in palliative care research, recruitment, attrition and compliance: Experience from a randomized controlled trial. Palliat Med. 1999;13:299-310.
5. Rinck GC, van den Bos GA, Kleijnen J, et al. Methodologic issues in effectiveness research on palliative cancer care: A systematic review. J Clin Oncol. 1997;15:1697-1707.
6. Phipps E, Harris D, Braitman LE, et al. Who enrolls in observational end of life research? Report from the cultural variations in approaches to end of life study. J Palliat Med. 2005;8:115-120.
7. Phipps EJ. What's end of life got to do with it? Research ethics with populations at life's end. Gerontologist. 2002;42:104-108.
8. Hudson P, Aranda S, McMurray N. Randomized controlled trials in palliative care: Overcoming the obstacles. Int J Palliat Nurs. 2001;7:427-434.
9. Sinnott C. Problems recruiting cancer patients to a comparative clinical trial of drug treatments for neuropathic pain in palliative care. J Pain Symptom Manage. 2002;23:270-272.
10. McMillan SC, Weitzner MA. Methodologic issues in collecting data from debilitated patients with cancer near the end of life. Oncol Nurs Forum. 2003;30:123-129.
11. Ewing G, Rogers M, Barclay S, et al. Recruiting patients into a primary care based study of palliative care: Why is it so difficult? Palliat Med. 2004;18:452-459.
12. Ross C, Cornbleet M. Attitudes of patients and staff to research in a specialist palliative care unit. Palliat Med. 2003;17:491-497.
13. Ling J, Rees E, Hardy J. What influences participation in clinical trials in palliative care in a cancer centre? Eur J Cancer. 2000;36:621-626.
14. Gordon EJ, Daugherty CK. Referral and decision making among advanced cancer patients participating in phase I trials at a single institution. J Clin Ethics. 2001;12:31-38.
15. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report Ethical Principles and Guidelines for the Protection of Human Subjects of Research. Available at: http://ohsr.od.nih.gov/guidelines/belmont.html. Accessed October 26, 2005.
16. Hudson P. Focus group interviews: A guide for palliative care researchers and clinicians. Int J Palliat Nurs. 2003;9:202-207.
17. Casarett DJ, Karlawish JH. Are special ethical guidelines needed for palliative care research? J Pain Symptom Manage. 2000;20:130-139.
18. Janssens R, Gordijn B. Clinical trials in palliative care: An ethical evaluation. Patient Educ Couns. 2000;41:55-62.
19. Addington-Hall J. Best practices in research methods: Palliative care research in practice. Can J Nurs Res. 2005;37:85-93.
20. Addington-Hall J. Research sensitivities to palliative care patients. Eur J Cancer Care (Engl). 2002;11:220-224.
21. Casarett DJ. Assessing decision-making capacity in the setting of palliative care research. J Pain Symptom Manage. 2003;25:S6-13.
22. Barnett M. Interviewing terminally ill people: Is it fair to take their time? Palliat Med. 2001;15:157-158.
23. Breitbart W, Bruera E, Chochinov H, Lynch M. Neuropsychiatric syndromes and psychological symptoms in patients with advanced cancer. J Pain Symptom Manage. 1995;10:131-141.
24. Pereira J, Hanson J, Bruera E. The frequency and clinical course of cognitive impairment in patients with terminal cancer. Cancer. 1997;15:79:835-842.
25. vanGorp WG, Marcotte TD, Sultzer D, et al. Screening for dementia: Comparison of three commonly used instruments. J Clin Exp Neuropsychol. 1999;21:29-38.
26. Bowie P, Branton T, Holmes J. Should the mini mental state examination be used to monitor dementia treatments? Lancet. 1999;354:1527-1528.
27. Appelbaum PS, Grisso T. MacArthur Competence Assessment Tool for Clinical Research. Sarasota, FL: Professional Resource Exchange Inc; 2001.
28. Seymour J, Payne S, Reid D, et al. Ethical and methodological issues in palliative care studies: The experiences of a research group. J Res Nurs. 2005;10:169-188.
29. Sentilhes-Monkam A, Serryn D. Conducting research in the palliative care population. Eur J Palliat Care. 2004;11:23-26.
30. Mazzocato C, Sweeney C, Bruera E. Clinical research in palliative care: Patient populations, symptoms, interventions and endpoints. Palliat Med. 2001;15:163-168.
31. Rees E, Hardy J. Novel consent process for research in dying patients unable to give consent. BMJ. 2003;327:198-200.
32. Saunders C, Baines M, Dunlop R. Living with Dying: A Guide to Palliative Care. Oxford: Oxford University Press; 1995.
33. Clark D. Cicely Saunders, Founder of the Hospice Movement: Selected Letters 1959-1999. Oxford: Oxford University Press; 2002.
34. Hudson P, Aranda S, Kristjanson L, Quinn K. Minimising gatekeeping in palliative care research. Eur J Palliat Care. 2005;12:165-169.