Click here for immediate access to the latest key research articles

Participating in a cancer clinical trial? The balancing of options in the loneliness of autonomy: A grounded theory interview study 

Authors: S. M. Madsen ^a;  S. Holm ^b; P. Riis ^c

Affiliations:	a Department of Medical Gastroenterology C, Copenhagen University Hospital in Herlev, Herlev, Denmark
	b Cardiff Law School, Museum Avenue, Cardiff CF10 3XJ, United Kingdom & Section for Medical Ethics, University of Oslo, Norway
	c Department of Medical Gastroenterology, Copenhagen University Hospital in Herlev, Herlev, Denmark

DOI: 10.1080/02841860600911164

Publication Frequency: 8 issues per year

Published in: Acta Oncologica, Volume 46, Issue 1 2007 , pages 49 - 59

Subject: Oncology;

Formats available: HTML (English) : PDF (English)

You have: FREE ACCESS

Article Requests: Order Reprints : Request Permissions

References

• 1. Blichert-Toft, M.,  Mouridsen, H. and Andersen, K West (1996) Clinical trials. Sem Surg Oncol 12 , pp. 32-38. [ crossref ]
• 2. Klabunde, CN,  Springer, BC,  Butler, B.,  White, MS and Atkins, J. (1999) Factors influencing enrolment in clinical trials for cancer treatment. South Med J 92 , pp. 1189-1193. [ crossref ]
• 3. Grunfeld, E.,  Zitzelsberger, L.,  Coristine, M. and Aspelund, F. (2002) Barriers and facilitators to enrolment in cancer clinical trials: Qualitative study of the perspectives of clinical research associates. Cancer 95 , pp. 1577-1583. [ crossref ] [ pubmed ]
• 4. Gross, CP,  Mallory, R.,  Heiat, A. and Krumholz, HM (2002) Reporting the recruitment process in clinical trials: Who are the patients and how did they get there?. Ann Intern Med 137 , pp. 10-16. [ pubmed ]
• 5. Lara Jr, PN,  Higdon, R.,  Lim, N.,  Kwan, K.,  Tanaka, M. and Lau, DH (2001) Prospective evaluation of cancer clinical trial accrual patterns: Identifying potential barriers to enrolment. J Clin Oncol 19 , pp. 1728-1733. [ pubmed ]
• 6. Fallowfield, L.,  Ratcliffe, D. and Souhami, R. (1997) Clinicians' attitudes to clinical trials of cancer therapy. Eur J Cancer 33 , pp. 2221-2229. [ crossref ]
• 7. Langley, C.,  Gray, S.,  Selley, S.,  Bowie, C. and Price, C. (2000) Clinicians' attitudes to recruitment to randomised trials in cancer care: A qualitative study. J Health Serv Res Policy 5 , pp. 164-169. [ pubmed ]
• 8. Wright, JR,  Crooks, D.,  Ellis, PM,  Mings, D. and Whelan, TJ (2002) Factors that influence the recruitment of patients to Phase III studies in oncology: The perspective of the clinical research associate. Cancer 95 , pp. 1584-1591. [ crossref ] [ pubmed ]
• 9. Comis, RL,  Miller, JD,  Aldige, CR,  Krebs, L. and Stoval, E. (2003) Public attitudes toward participation in cancer clinical trials. J Clin Oncol 21 , pp. 830-835. [ crossref ] [ pubmed ]
• 10. Grant III, CH,  Cissna, KN and Rosenfeld, LB (2000) Patients' perceptions of physicians' communication and outcomes of the accrual to trial process. Health Commun 12 , pp. 23-39. [ pubmed ]
• 11. Jenkins, V.,  Leach, L.,  Fallowfield, L.,  Nicholls, K. and Newsham, A. (2002) Describing randomisation: Patients' and the public's preferences compared with clinicians' practice. Br J Cancer 87 , pp. 854-858. [ crossref ] [ pubmed ]
• 12. Ross, S.,  Grant, A.,  Counsell, C.,  Gillespie, W.,  Russell, I. and Prescott, R. (1999) Barriers to participation in randomised controlled trials: A systematic review. J Clin Epidemiol 52 , pp. 1143-1156. [ crossref ] [ pubmed ]
• 13. Solomon, MJ,  Pager, CK,  Young, JM,  Roberts, R. and Butow, P. (2003) Patient entry into randomized controlled trials of colorectal cancer treatment: Factors influencing participation. Surgery 133 , pp. 608-613. [ crossref ] [ pubmed ]
• 14. Slevin, M.,  Mossman, J.,  Bowling, A.,  Leonard, R.,  Steward, W.,  Harper, P.,  McIllmurray, M. and Thatcher, N. (1995) Volunteers or victims: Patients views of randomised cancer clinical trials. Br J Cancer 71 , pp. 1270-1274. [ pubmed ]
• 15. Verheggen, FW,  Nieman, F. and Jonkers, R. (1998) Determinants of patient participation in clinical studies requiring informed consent: Why patients enter a clinical trial. Pat Educ Couns 35 , pp. 111-125. [ crossref ]
• 16. Madsen, SM,  Holm, S. and Riis, P. (1999) Ethical aspects of clinical trials: The attitudes of the public and out-patients. J Intern Med 245 , pp. 571-579. [ crossref ] [ pubmed ]
• 17. Madsen, SM,  Holm, S.,  Davidsen, B.,  Munkholm, P.,  Schlichting, P. and Riis, P. (2000) Ethical aspects of clinical trials: The attitudes of participants in two non-cancer trials. J Intern Med 248 , pp. 461-473. [ crossref ]
• 18. Madsen, SM,  Mirza, MR,  Holm, S.,  Hilsted, KL,  Kampmann, K. and Riis, P. (2002) Attitudes towards clinical research of participants and non-participants. J Intern Med 251 , pp. 156-168. [ crossref ] [ pubmed ]
• 19. Verheggen, FW,  Nieman, FH,  Reerink, E. and Kok, GJ (1998) Patient satisfaction with clinical trial participation. Int J Qual Health Care 10 , pp. 319-330. [ crossref ] [ pubmed ]
• 20. Pope, C. and Mays, N. (1995) Reaching the parts other methods cannot reach: An introduction to qualitative methods in health and health services research. BMJ 311:6996 , pp. 42-45. [ pubmed ]
• 21. Snowdon, C.,  Garcia, J. and Elbourne, D. (1997) Making sense of randomization; responses of parents of critically ill babies to random allocation of treatment in a clinical trial. Soc Sci Med 45 , pp. 1337-1355. [ crossref ]
• 22. Cox, K. (2003) Assessing the quality of life of patients in phase I and II anti-cancer drug trials: Interviews versus questionnaires. Soc Sci Med 56 , pp. 921-934. [ crossref ]
• 23. Featherstone, K. and Donovan, JL (2002) “Why don't they just tell me straight, why allocate it?” The struggle to make sense of participating in a randomised controlled trial. Soc Sci Med 55 , pp. 709-719. [ crossref ]
• 24. Featherstone, K. and Donovan, JL (1998) Random allocation or allocation at random? Patients' perspectives of participation in a randomised controlled trial. BMJ 317:7167 , pp. 1177-1180. [ pubmed ]
• 25. Appelbaum, PS,  Roth, LH and Lidz, C. (1982) The therapeutic misconception: Informed consent in psychiatric research. Int J Law Psychiatry 5 , pp. 319-329. [ crossref ] [ pubmed ]
• 26. Madsen, SM,  Holm, S. and Riis, P. Attitudes towards clinical research amongst cancer trial participants and non-participants: An interview-study using a Grounded Theory approach. J Med Ethics — (in press)
• 27. Strauss, A. and Corbin, J. (1998) Basics of qualitative research. Techniques and procedures for developing Grounded Theory 2nd ed, SAGE Publications Inc , Thousand Oaks, California 91320
• 28. Mackillop, WJ,  Palmer, MJ,  O'Sullivan, B.,  Ward, GK,  Steele, R. and 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 , pp. 388-395. [ pubmed ]
• 29. Zachariae, R.,  Pedersen, CG,  Jensen, AB,  Ehrnrooth, E.,  Rossen, PB and von der, MH (2003) Association of perceived physician communication style with patient satisfaction, distress, cancer-related self-efficacy, and perceived control over the disease. Br J Cancer 88 , pp. 658-665. [ crossref ] [ pubmed ]
• 30. Barbour, RS (2001) Checklists for improving rigour in qualitative research: A case of the tail wagging the dog?. BMJ 322 , pp. 1115-1117. [ pubmed ] [ crossref ]