Barriers to medical research participation as perceived by clinical trial investigators: Communicating with rural and African American communities

Journal of Health Communication

Volumn 20, Issue 1, 2015, Pages 88-96

  Tanner, Andrea ^a   Kim, Sei Hill ^a   Friedman, Daniela B ^a   Foster, Caroline ^a   Bergeron, Caroline D ^a  

^a UNIVERSITY OF SOUTH CAROLINA   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AFRICAN AMERICAN; ATTITUDE TO HEALTH; CLINICAL TRIAL (TOPIC); ETHNOLOGY; HEALTH CARE DELIVERY; HEALTH CARE PLANNING; HEALTH PERSONNEL ATTITUDE; HUMAN; INTERPERSONAL COMMUNICATION; MEDICAL RESEARCH; PERSONNEL; PSYCHOLOGY; RURAL POPULATION; UNITED STATES; UTILIZATION;

AFRICAN AMERICANS; ATTITUDE OF HEALTH PERSONNEL; BIOMEDICAL RESEARCH; CLINICAL TRIALS AS TOPIC; COMMUNICATION; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEALTH SERVICES ACCESSIBILITY; HUMANS; MEDICALLY UNDERSERVED AREA; RESEARCH PERSONNEL; RURAL POPULATION; SOUTH CAROLINA;

EID: 84927560553     PISSN: 10810730     EISSN: 10870415     Source Type: Journal    
DOI: 10.1080/10810730.2014.908985     Document Type: Article

References (64)

1. Adams, S. A., Hebert, J. R., Bolick-Aldrich, S., Daguise, V. G., Mosley, C. M., Modayil, M. V., Brandt, H. M. (2006). Breast cancer disparities in South Carolina: Early detection, special programs, and descriptive epidemiology. Journal of the South Carolina Medical Association, 102(July), 231-239.
2. Adams-Campbell, L. L., Ahaghotu, C., Gaskins, M., Dawkins, F. W., Smoot, D., Polk, O. D., & DeWitty, R. L. (2004). Enrollment of African Americans onto clinical treatment trials: Study design barriers. Journal of Clinical Oncology, 22, 730-734.
3. Advani, A. S., Atkeson, B., Brown, C. L., Peterson, B. L., Fish, L., Johnson, J. L., & Gautier, M. (2003). Barriers to the participation of African-American patients with cancer in clinical trials: A pilot study. Cancer, 97, 1499-1506.
4. Baquet, C. R., Commiskey, P., Mullins, D., & Mishra, S. I. (2006). Recruitment and participation in clinical trials: Socio-demographic, rural=urban, and health care access predictors. Cancer Detection and Prevention, 30, 24-33.
5. Bonevski, B., Magin, P., Horton, G., Foster, M., & Girgis, A. (2011). Response rates in GP surveys: Trialing two recruitment strategies. Australian Family Physician, 40(6), 427-430.
6. Braithwaite, D., Emery, J., de Lusignan, S., & Sutton, S. (2003). Using the Internet to conduct surveys of health professionals: A valid alternative? Family Practice, 20, 545-551.
7. Brandon, D. T., Isaac, L. A., & LaVeist, T. A. (2005). The legacy of Tuskegee and trust in medical care: Is Tuskegee responsible for race differences in mistrust of medical care? Journal of the National Medical Association, 97, 951-956.
8. Branson, R. D., Davis, K., Jr., & Butler, K. L. (2007). African Americans' participation in clinical research: Importance, barriers, and solutions. American Journal of Surgery, 193, 32-39; discussion 40. doi:S0002-9610(05)00873-1 [pii] 10.1016=j.amjsurg.2005.11.007
9. Brown, D. R., Fouad, M. N., Basen-Engquist, K., & Tortolero-Luna, G. (2000). Recruitment and retention of minority women in cancer screening, prevention, and treatment trials. Annals of Epidemiology, 10, S13-S21.
10. Brown, D. R., & Topcu, M. (2003). Willingness to participate in clinical treatment research among older African Americans and Whites. Gerontologist, 43, 62-72.
11. Chandra, A., & Paul, D. P., 3rd. (2003). African American participation in clinical trials: Recruitment difficulties and potential remedies. Hospital Topics, 81(2), 33-38.
12. Christian, M. C., & Trimble, E. L. (2003). Increasing participation of physicians and patients from underrepresented racial and ethnic groups in National Cancer Institute-sponsored clinical trials. Cancer Epidemiology Biomarkers Prevention, 12, 277S-283S.
13. Cohen, D. J., & Crabtree, B. F. (2008). Evaluative criteria for qualitative research in health care: Controversies and recommendations. Annals of Family Medicine, 6, 331-339. doi:10.1370=afm.818
14. Cohen, G. I. (2003). Clinical research by community oncologists. CA: A Cancer Journal for Clinicians, 53, 73-81.
15. Comis, R. L., Miller, J. D., Aldige, C. R., Krebs, L., & Stoval, E. (2003). Public attitudes toward participation in cancer clinical trials. Journal of Clinical Oncology, 21, 830-835.
16. Couper, M. P., Traugott, M. W., & Lamias, M. J. (2001). Web survey design and administration. Public Opinion Quarterly, 65, 230-253.
17. Drake, B. F., Keane, T. E., Mosley, C. M., Adams, S. A., Elder, K. T., Modayil, M., Hebert, J. R. (2006). Prostate cancer disparities in South Carolina: Early detection, special programs, and descriptive epidemiology. Journal of the South Carolina Medical Association, 102(7), 241-249.
18. Ellis, P. M., Butow, P. N., Tattersall, M. H., Dunn, S. M., & Houssami, N. (2001). Randomized clinical trials in oncology: Understanding and attitudes predict willingness to participate. Journal of Clinical Oncology, 19, 3554-3561.
19. Ford, J. G., Howerton, M. W., Bolen, S., Gary, T. L., Lai, G. Y., Tilburt, J., Bass, E. B. (2005). Knowledge and access to information on recruitment of underrepresented populations to cancer clinical trials. Evidence Report=Technology Assessment (Summary), (122), 1-11.
20. Ford, M. E., Havstad, S. L., & Tilley, B. C. (2003). Recruiting older African American men to a cancer screening trial (the AAMEN Project). Gerontologist, 43, 27-35.
21. Frank, G. (2004). Current challenges in clinical trial patient recruitment and enrollment. SoCRA Source, 2, 30-38.
22. Friedman, D. B., Corwin, S. J., Rose, I. D., & Dominick, G. M. (2009). Prostate cancer communication strategies recommended by older African-American men in South Carolina: A qualitative analysis. Journal of Cancer Education, 24, 204-209. doi:10.1080=08858190902876536
23. Friedman, M. A., & Cain, D. F. (1990). National Cancer Institute sponsored cooperative clinical trials. Cancer, 65(10 Suppl.), 2376-2382.
24. Galesic, M., & Bosnjak, M. (2009). Effects of questionnaire length on participation and indicators of response quality in a web survey. Public Opinion Quarterly, 73, 349-360.
25. Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R., McCaskill-Steven, W. J. (2000). Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors. Annals of Epidemiology, 10(8 Suppl), S22-S34.
26. Go, R. S., Frisby, K. A., Lee, J. A., Mathiason, M. A., Meyer, C. M., Ostern, J. L., Umberger, K. E. (2006). Clinical trial accrual among new cancer patients at a community-based center. Cancer, 106, 426-433.
27. Gross, C. P., Filardo, G., Mayne, S. T., & Krumholz, H. M. (2005). The impact of socioeconomic status and race on trial participation for older women with breast cancer. Cancer, 103, 483-491. doi:10.1002=cncr.20792
28. Guadagnolo, B. A., Petereit, D. G., Helbig, P., Koop, D., Kussman, P., Dunn, E. F., & Patnaik, A. (2009). Involving American Indians and medically underserved rural populations in cancer clinical trials. Clinical Trials, 6, 610-617.
29. Hebert, J. R., Elder, K., & Ureda, J. R. (2006). Meeting the challenges of cancer prevention and control in South Carolina: Focus on seven cancer sites, engaging partners. Journal of the South Carolina Medical Association, 102(August), 177-182.
30. Hebert, J. R., Hurley, T. G., Harmon, B. E., Heiney, S., Hebert, C. J., & Steck, S. E. (2011). A diet, physical activity, and stress reduction intervention in men with rising prostate-specific antigen after treatment for prostate cancer. Cancer Epidemiology, 36(2), e128-e136.
31. Hudson, S. V., Momperousse, D., & Leventhal, H. (2005). Physician perspectives on cancer clinical trials and barriers to minority recruitment. Cancer Control, 12(Suppl. 2), 93-96.
32. Jepson, C., Asch, D. A., Hershey, J. C., & Ubel, P. A. (2005). In a mailed physician survey, questionnaire length had a threshold effect on response rate. Journal of Clinical Epidemiology, 58, 103-105.
33. Jones, J. M., Nyhof-Young, J., Moric, J., Friedman, A., Wells, W., & Catton, P. (2006). Identifying motivations and barriers to patient participation in clinical trials. Journal of Cancer Education, 21, 237-242.
34. Kelch, R. P. (2002). Maintaining the public trust in clinical research. New England Journal of Medicine, 346, 285-287.
35. Kellerman, S., & Herold, J. (2001). Physician response to surveys: A review of the literature. American Journal of Preventive Medicine, 20, 61-67.
36. Klabunde, C. N., Springer, B. C., Butler, B., White, M. S., & Atkins, J. (1999). Factors influencing enrollment in clinical trials for cancer treatments. Southern Medical Journal, 92, 1189-1193.
37. Knapp, H., & Kirk, S. (2003). Using pencil and paper, Internet and touch-tone phones for self-administered surveys: Does methodology matter? Computers in Human Behavior, 19, 117-134.
38. Langford, A., Resnicow, K., & An, L. (2010). Clinical trial awareness among racial=ethnic minorities in HINTS 2007: Sociodemographic, attitudinal, and knowledge correlates. Journal of Health Communication, 15(Suppl. 3), 92-101. doi:10.1080=10810730.2010.525296
39. Lara, P. N., Jr., Higdon, R., Lim, N., Kwan, K., Tanaka, M., Lau, D. H., Lam, K. S. (2001). Prospective evaluation of cancer clinical trial accrual patterns: Identifying potential barriers to enrollment. Journal of Clinical Oncology, 19, 1728-1733.
40. Lara, P. N., Jr., Paterniti, D. A., Chiechi, C., Turrell, C., Morain, C., Horan, N., Chen, M. S. (2005). Evaluation of factors affecting awareness of and willingness to participate in cancer clinical trials. Journal of Clinical Oncology, 23, 9282-9289.
41. Leitch, A. M., Beitsch, P. D., McCall, L. M., Posther, K., Newman, L. A., Herndon, J. E., 2nd, & Giuliano, A. E. (2005). Patterns of participation and successful patient recruitment to American College of Surgeons Oncology Group Z0010, a phase II trial for patients with early-stage breast cancer. American Journal of Surgery, 190, 539-542. doi:S0002-9610(05)00558-1 [pii] 10.1016=j.amjsurg.2005.06.024
42. Lippman, M. E., & Chabner, B. A. (1986). Overview of Proceedings of the NIH Consensus Development Conference on Adjuvant Chemotherapy and Endocrine Therapy for Breast Cancer. NCI Monographs, 1. Bethesda, MD: National Cancer Institute.
43. McCaskill-Stevens, W., Pinto, H., Marcus, A. C., Comis, R., Morgan, R., Plomer, K., & Schoentgen, S. (1999). Recruiting minority cancer patients into cancer clinical trials: A pilot project involving the Eastern Cooperative Oncology Group and the National Medical Association. Journal of Clinical Oncology, 17, 1029-1039.
44. McComas, K. A., Yang, Z., Gay, G. K., Leonard, J. P., Dannenberg, A. J., & Dillon, H. (2010). Individuals' willingness to talk to their doctors about clinical trial enrollment. Journal of Health Communication, 15, 189-204. doi:10.1080=10810730903528058
45. Meropol, N. J., Buzaglo, J. S., Millard, J., Damjanov, N., Miller, S. M., Ridgway, C., & Watts, P. (2007). Barriers to clinical trial participation as perceived by oncologists and patients. Journal of the National Comprehensive Cancer Network, 5, 753-761.
46. Moinpour, C. M., Atkinson, J. O., Thomas, S. M., Underwood, S. M., Harvey, C., Parzuchowski, J., & Coltman, C. A., Jr. (2000). Minority recruitment in the prostate cancer prevention trial. Annals of Epidemiology, 10(8 Suppl), S85-S91.
47. Pinto, H. A., McCaskill-Stevens, W., Wolfe, P., & Marcus, A. C. (2000). Physician perspectives on increasing minorities in cancer clinical trials: An Eastern Cooperative Oncology Group (ECOG) Initiative. Annals of Epidemiology, 10(8 Suppl), S78-S84.
48. Quinn, G. P., Bell, B. A., Bell, M. Y., Caraway, V. D., Conforte, D., Graci, L. B., & Bepler, G. (2007). The guinea pig syndrome: Improving clinical trial participation among thoracic patients. Journal of Thoracic Oncology, 2, 191-196.
49. Ravikoff, J. E., Cole, E. B., & Korzenik, J. R. (2012). Barriers to enrollment in inflammatory bowel disease randomized controlled trials: An investigation of patient perspectives. Inflammatory Bowel Disease, 18, 2092-2098. doi:10.1002=ibd.22872.
50. Royal, C., Baffoe-Bonnie, A., Kittles, R., Powell, I., Bennett, J., Hoke, G., & Collins, F. (2000). Recruitment experience in the first phase of the African American Hereditary Prostate Cancer (AAHPC) study. Annals of Epidemiology, 10, S68-S77.
51. Sateren, W. B., Trimble, E. L., Abrams, J., Brawley, O., Breen, N., Ford, L., & Christian, M. C. (2002). How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials. Journal of Clinical Oncology, 20, 2109-2117.
52. Seto, B. (2001). History of medical ethics and perspectives on disparities in minority recruitment and involvement in health research. American Journal of the Medical Sciences, 322, 248-250.
53. Shavers, V. L., Lynch, C. F., & Burmeister, L. F. (2002). Racial differences in factors that influence the willingness to participate in medical research studies. Annals of Epidemiology, 12, 248-256.
54. South Carolina Department of Health and Environmental Control. (2009). Burden of diabetes in South Carolina. Columbia, SC: Bureau of Community Health and Chronic Disease Prevention and the Diabetes Initiative of South Carolina.
55. South Carolina Department of Health and Environmental Control. (2010). Burden of heart disease and stroke in South Carolina. Columbia, SC: Heart Disease and Stroke Prevention Division.
56. South Carolina Rural Health Research Center. (2008). State rural plan for South Carolina. Columbia, SC: South Carolina Rural Health Research Center. Retrieved from http://www.ruralcenter.org/sites/default/files/webform/Compiled%20SC%20Rural%20Health%20Plan%20082508version-0.pdf
57. Stone, V. E., Mauch, M. Y., & Steger, K. A. (1998). Provider attidtues regarding participation of women and persons of color in AIDS clinical trials. Journal of Acquired Immune Syndromes and Human Retrovirology, 19, 245-253.
58. Thomas, S. B., & Quinn, S. C. (1991). The Tuskegee Syphilis Study, 1932-1972: Implications for HIV education and AIDS risk programs in the Black community. American Journal of Public Health, 81, 1498-1505.
59. Trauth, J. M., Jernigan, J. C., Siminoff, L. A., Musa, D., Neal-Ferguson, D., & Weissfeld, J. (2005). Factors affecting older african american women's decisions to join the PLCO Cancer Screening Trial. Journal of Clinical Oncology, 23, 8730-8738. doi:23=34=8730 [pii] doi:10.1200=JCO.2004.00.9571
60. U.S. Census Bureau. (2010). Census urban and rural classification and urban area criteria. Retrieved from http://www.census.gov/geo/www/ua/2010urbanruralclass.html
61. U.S. Office of Management and Budget. (2000). Standards for Defining Metropolitan and Micropolitan Statistical Areas.
62. Vesey, G. A. (2002). A successful strategy for recruitment and retention of Black elders in applied research. African American Research Perspectives, 8, 40-56.
63. Weckstein, D. J., Thomas, C. A., Emery, I. F., Shea, B. F., Fleury, A., White, M. E., & Pilar, C. (2011). Assessment of perceived cost to the patient and other barriers to clinical trial participation. Journal of Oncology Practice, 7, 330-333.
64. Yang, Z. J., McComas, K., Gay, G., Leonard, J. P., Dannenberg, A. J., & Dillon, H. (2010). Motivation for health information seeking and processing about clinical trial enrollment. Health Communication, 25, 423-436. doi:10.1080=10410236.2010.483338