Barriers to participation in clinical trials of cancer: A meta-analysis and systematic review of patient-reported factors

Lancet Oncology

Volumn 7, Issue 2, 2006, Pages 141-148

  Mills, Edward J ^a   Seely, Dugald ^b   Rachlis, Beth ^d   Griffith, Lauren ^a   Wu, Ping ^c   Wilson, Kumanan ^e   Ellis, Peter ^a   Wright, James R ^a  

^a MCMASTER UNIVERSITY   (Canada)

^b HOSPITAL FOR SICK CHILDREN   (Canada)

^c CANADIAN COLLEGE OF NATUROPATHIC MEDICINE   (Canada)

^d UNIVERSITY OF BRITISH COLUMBIA   (Canada)

^e UNIVERSITY OF TORONTO   (Canada)

Author keywords

[No Author keywords available]

Indexed keywords

ANTINEOPLASTIC AGENT; PLACEBO;

ARTICLE; CANCER PATIENT; CLINICAL ASSESSMENT; CLINICAL PROTOCOL; CLINICAL RESEARCH; CLINICAL STUDY; CLINICAL TRIAL; HEALTH SURVEY; HUMAN; INTERNAL VALIDITY; MALIGNANT NEOPLASTIC DISEASE; META ANALYSIS; PATIENT CARE; PATIENT IDENTIFICATION; PATIENT PARTICIPATION; PHYSICIAN ATTITUDE; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUALITATIVE VALIDITY; QUANTITATIVE ANALYSIS; RANDOMIZATION; SIDE EFFECT; STATISTICAL ANALYSIS; STRUCTURED INTERVIEW; STRUCTURED QUESTIONNAIRE; SYSTEMATIC REVIEW;

CLINICAL TRIALS; HUMANS; NEOPLASMS; REFUSAL TO PARTICIPATE;

EID: 31544445259     PISSN: 14702045     EISSN: None     Source Type: Journal    
DOI: 10.1016/S1470-2045(06)70576-9     Document Type: Article

References (63)

1. Ries L. Eisner MP Kosary CL et al. SEER cancer statistics review 1975-2002 2004 National Cancer Institute Bethesda
2. M Ross K Jeffords J Gold Reasons for entry into and understanding HIV/ AIDS clinical trials: A preliminary study AIDS Care 6 1993 77-82
3. M Kaanoi K Braun C Gotay et al. Oncologists' knowledge, attitudes and practices related to cancer treatment clinical trials Hawaii Med J 61 2001 91-95
4. V Murthy HM Krumholz CP Gross Participation in cancer clinical trials: race-, sex-, and age-based disparities JAMA 291 2004 2720-2726
5. C Townsley R Selby LL Siu Systematic review of barriers to the recruitment of older patients with cancer onto clinical trials J Clin Oncol 23 2005 3112-3124
6. CASP Critical appraisal skills programme. Evidence-based healthcare. Workbook and CD-ROM. 10 questions for appraising qualitative research http://www.update-software.com/publications/casp/ (accessed Jan 12, 2006)
7. E Mills C Cooper G Guyatt et al. Barriers to participating in an HIV vaccine trial: A systematic review Aids 18 2004 2235-2242
8. E Mills AR Jadad C Ross K Wilson Systematic review of qualitative studies exploring parental beliefs and attitudes toward childhood vaccination identifies common barriers to vaccination J Clin Epidemiol 58 2005 1081-1088
9. EJ Mills VM Montori CP Ross et al. Systematically reviewing qualitative studies complements survey design: An exploratory study of barriers to paediatric immunisations J Clin Epidemiol 58 2005 1101-1108
10. P Ellis Butow PN Focus group interviews examining attitudes to randomised trials among breast cancer patients and the general community Aust NZ J Public Health 22 1998 528-532
11. H Llewellyn-Thomas MJ McGreal EC Thiel et al. Patients' willingness to enter clinical trials: Measuring the association with perceived benefit and preference for decision participation Soc Sci Med 32 1991 35-42
12. N Mills JL Donovan M Smith et al. Perceptions of equipoise are crucial to trial participation: A qualitative study of men in the ProtecT study Control Clin Trials 24 2003 272-282
13. M Eng L Taylor M Verhoef et al. Understanding participation in a trial comparing cryotherapy and radiation treatment Can J Urol 12 2005 2607-2613
14. V Jenkins LJ Fallowfield A Souhami M Sawtell How do doctors explain randomised clinical trials to their patients? Eur J Cancer 35 1999 1187-1193
15. S Robinson M Ashley MA Haynes Attitudes of African-Americans regarding prostate cancer clinical trials J Comm Health 21 1996 77-87
16. K Cox M Avis Psychosocial aspects of participation in early anticancer drug trials: Report of a pilot study Cancer Nurs 19 1996 177-186
17. R Pentz AL Flamm J Sugarman et al. Study of the media's potential influence on prospective research participants' understanding of and motivations for participation in a high-profile phase 1 trial J Clin Oncol 20 2002 3785-3791
18. NL Roberson Clinical trial participation: Viewpoints from racial/ethnic groups Cancer 74 1994 2687-2691
19. D Brown MN Fouad K Basen-Engquist G Tortolero-Luna Recruitment and retention of minority women in cancer screening, prevention and treatment trials Ann Epidemiol 10 2000 S13-S21
20. M Fouad E Partridge L Green et al. Minority recruitment in clinical trials: A conference at Tuskegee, researchers and the community Ann Epidemiol 10 2000 S35-S41
21. C Coyne C Demian-Popescu P Brown Rural cancer patients' perspectives on clinical trials: A qualitative study J Cancer Educ 19 2004 165-169
22. A Advani B Atkeson CL Brown et al. Barriers to the participation of African-American patients with cancer in clinical trials Cancer 97 2003 1499-1506
23. B Cassileth EJ Lusk DS Miller S Hurwitz Attitudes towards clinical trials among patients and the public JAMA 248 1982 968-970
24. R Comis JD Aldige CR Aldige et al. Public attitudes towards participation in cancer clinical trials J Clin Oncol 21 2003 830-835
25. P Ellis SM Dowsett PN Butow Tattersall MHN Attitudes to randomized clinical trials amongst out-patients attending a medical oncology unit Health Expect 2 1999 33-43
26. P Ellis PN Butow Tattersall HMN et al. Randomised clinical trials in oncology: Understanding and attitudes predict willingness to participate J Clin Oncol 19 2001 3554-3561
27. P Ellis PN Butow Tattersall MHN Informing breast cancer patients about clinical trials: Randomized clinical trial of an education booklet Ann Oncol 13 2002 1414-1423
28. L Fallowfield V Jenkins C Brennan et al. Attitudes of patients to randomised clinical trials of cancer therapy Eur J Cancer 34 1998 1554-1559
29. A Flessig V Jenkins L Fallowfield Results of an intervention study to improve communication about randomised clinical trials of cancer therapy Eur J Cancer 37 2001 322-331
30. V Jenkins L Fallowfield Reasons for accepting or declining to participate in randomized clinical trials for cancer therapy Br J Cancer 82 2000 1783-1788
31. M Kemeny BL Peterson AB Kornblith et al. Barriers to clinical trial participation by older women with breast cancer J Clin Oncol 21 2003 2268-2275
32. W Mackillop MJ Palmer B O'Sullivan et al. Clinical trials in cancer: The role of surrogate patients in defining what constitutes an ethically acceptable clinical experiment Br J Cancer 59 1989 388-395
33. S Madsen MR Mirza S Holm et al. Attitudes towards clinical trial research amongst participants and nonparticipants J Intern Med 251 2002 156-168
34. C Martel Y Li L Beckett et al. An evaluation of barriers to accrual in the era of legislation requiring insurance coverage of cancer clinical trial costs in California Cancer J 10 2004 294-300
35. N Meropol KP Weinfurt CB Burnett et al. Perceptions of patients and physicians regarding phase 1 cancer clinical trials: Implications for physician-patient communications J Clin Oncol 21 2003 2589-2596
36. M Slevin J Mossman A Bowling et al. Volunteers or victims: Patients' views of randomised cancer clinical trials Br J Cancer 71 1995 1270-1274
37. M Solomon CK Pager JM Young et al. Patient entry into randomized controlled trials of colorectal cancer treatment: Factors influencing participation Surgery 133 2003 608-613
38. J Sutherland R da Cunha GA Lockwood JE Till What attitudes and beliefs underlie patients' decisions about participating in chemotherapy trials? Med Decis Making 18 1998 61-69
39. J Ling E Rees J Hardy What influences participation in clinical trials in palliative care in a cancer centre? Eur J Cancer 36 2000 621-626
40. PN Lara Jr R Higdon N Lim et al. Prospective evaluation of cancer clinical trial accrual patterns: Identifying potential barriers to enrollment J Clin Oncol 19 2001 1728-1733
41. ME Melisko F Hassin L Metzroth et al. Patient and physician attitudes toward breast cancer clinical trials: Developing interventions based on understanding barriers Clin Breast Cancer 6 2005 45-54
42. G Garcea T Lloyd WP Steward et al. Differences in attitudes between patients with primary colorectal cancer and patients with secondary colorectal cancer: Is it reflected in their willingness to participate in drug trials? Eur J Cancer Care (Engl) 14 2005 166-170
43. Early Breast Cancer Trialists' Collaborative Group Effects of chemotherapy and hormonal therapy for early breast cancer on recurrence and 15-year survival: An overview of the randomised trials Lancet 365 2005 1687-1717
44. M Baum New approach for recruitment into randomised controlled trials Lancet 341 1993 812-813
45. D Collyar The value of clinical trials from a patient perspective Breast J 2000 310-314
46. R Brown PN Butow P Ellis et al. Seeking informed consent to cancer clinical trials: Describing current practice Soc Sci Med 58 2004 445-2457
47. L Ellington S Wahab S Sahami Martin et al. Factors that influence Spanish- and English-speaking participants' decision to enroll in cancer randomized clinical trials Psycho-oncology 2005 published online June 22. DOI:10.1002/pon.943.
48. E Ernst 50 years ago: The Nuremberg doctors' tribunal. Part 4: Nazi medicine's relevance today Wien Med Wochenschr 147 1997 70-71
49. J Ioannidis SJ Evans PC Gotzsche et al. Better reporting of harms in randomized trials: An extension of the CONSORT statement Ann Intern Med 141 2004 781-788
50. V Jenkins L Fallowfield A Cox The preferences of 600 patients for different descriptions of randomisation Br J Cancer 92 2005 807-810
51. V Jenkins L Fallowfield I Solis-Trapala et al. Discussing randomised clinical trials of cancer therapy: Evaluation of a Cancer Research UK training programme BMJ 330 2005 400
52. CP Gross N Wong JA Dubin et al. Enrolment of older persons in cancer trials after the Medicare reimbursement policy change Arch Intern Med 165 2005 1514-1520
53. CP Gross V Murthy Y Li et al. Cancer trial enrollment after state-mandated reimbursement J Natl Cancer Inst 96 2004 1063-1069
54. N Britten Campbell R Pope C et al. Using meta-ethnography to synthesise qualitative research: A worked example J Health Serv Res Policy 7 2002 209-215
55. R Campbell P Pound C Pope et al. Evaluating meta-ethnography: A synthesis of qualitative research on lay experiences of diabetes and diabetes care Soc Sci Med 56 2003 671-684
56. M Dixon-Woods R Fitzpatrick K Roberts Including qualitative research in systematic reviews: Opportunities and problems J Eval Clin Pract 7 2001 125-133
57. J Popay A Rogers G Williams Rationale and standards for the systematic review of qualitative literature in health services research Qual Health Res 8 1998 341-351
58. B Patterson S Thorne C Canam C Jillings Meta-study of qualitative health research 2001 Sage Publications Thousand Oaks
59. Roberts K Dixon-Woods M Fitzpatrick R et al. Factors affecting uptake of childhood immunisation: A Bayesian synthesis of qualitative and quantiative evidence Lancet 360 2002 1596-1599
60. E Mills K Wilson B Rachlis et al. Barriers to participating in HIV drug trials: A systematic review Lancet Infect Dis 6 2006 32-38
61. El-Sadr W Capps L The challenge of minority recruitment in clinical trials JAMA 267 1992 954-957
62. US National Institutes of Health NIH policy on reporting race and ethnicity data: Subjects in clinical research. Aug 8, 2001 http://grants.nih.gov/grants/guide/notice-files/NOT-OD-01-053.html (accessed Jan 6, 2006)
63. J Wright TJ Whelan S Schiff et al. Why cancer patients enter randomized clinical trials: Exploring factors that influence their decision J Clin Oncol 22 2004 4312-4318