A community-academic partnership to explore informational needs of African American women as a primer for cancer clinical trial recruitment

References

• Abraham, N. S., J. M. Young, and M. J. Solomon. 2006. “A Systematic Review of Reasons for Nonentry of Eligible Patients Into Surgical Randomized Controlled Trials.” Surgery 139 (4): 469–483. doi:10.1016/j.surg.2005.08.014.
   PubMed Web of Science ®Google Scholar
• Banda, D., A. V. Libin, H. Wang, and S. M. Swain. 2012. “A Pilot Study of a Culturally Targeted Video Intervention to Increase Participation of African American Patients in Cancer Clinical Trials.” The Oncologist 17 (5): 708–714.
   PubMed Web of Science ®Google Scholar
• Brooks, S. E., C. Y. Muller, W. Robinson, E. M. Walker, K. Yeager, E. D. Cook, S. Friedman, C. P. Somkin, C. L. Brown, and W. McCaskill-Stevens. 2015. “Increasing Minority Enrollment Into Clinical Trials: Practical Strategies and Challenges Emerge From the NRG Oncology Accrual Workshop.” Journal of Oncology Practice 11 (6): 486–490.
   PubMed Web of Science ®Google Scholar
• Brown, D. R., M. N. Fouad, K. Basen-Engquist, and G. Tortolero-Luna. 2000. “Recruitment and Retention of Minority Women in Cancer Screening, Prevention, and Treatment Trials.” Annals of Epidemiology 10 (8 Suppl): S13–S21. doi:10.1016/S1047-2797(00)00197-6coa.
   PubMed Web of Science ®Google Scholar
• Coakley, M., E. O. Fadiran, J. Parrish, R. A. Griffith, E. Weiss, and C. Carter. 2012. “Dialogues on Diversifying Clinical Trials: Successful Strategies for Engaging Women and Minorities in Clinical Trials.” Journal of Women’s Health 21 (7): 713–716. doi:10.1089/jwh.2012.3733.
   PubMed Web of Science ®Google Scholar
• Corbie-Smith, G., A. S. Ammerman, M. L. Katz, D. M. M. St George, C. Blumenthal, C. Washington, B. Weathers, T. C. Keyserling, and B. Switzer. 2003. “Trust, Benefit, Satisfaction, and Burden.” Journal of General Internal Medicine 18 (7): 531–541. doi:10.1046/j.1525-1497.2003.21061.x.
   PubMed Web of Science ®Google Scholar
• Corbie-Smith, G., S. B. Thomas, and D. M. M. St. George. 2002. “Distrust, Race, and Research.” Archives of Internal Medicine 162 (21): 2458–2463. doi:10.1001/archinte.162.21.2458.
   PubMed Web of Science ®Google Scholar
• Dickerson, D. L., R. F. Leeman, C. M. Mazure, and S. S. O'Malley. 2009. “The Inclusion of Women and Minorities in Smoking Cessation Clinical Trials: A Systematic Review.” American Journal of Addictions 18 (1): 21–28. doi:10.1080/10550490802408522.
   PubMed Web of Science ®Google Scholar
• Duncan, D. F. 1989. “Content Analysis in Health Education Research: An introduction to Purposes and Methods.” Health Education 20 (7): 27–31.
   PubMedGoogle Scholar
• Emanuel, E. J., R. A. Crouch, J. D. Arras, J. D. Moreno, and C. Grady, eds. 2003. Ethical and Regulatory Aspects of Clinical Research. Baltimore, MD: The Johns Hopkins University Press.
   Google Scholar
• Flores, E., P. Espinoza, J. Jacobellis, R. Bakemeier, and N. Press. 2006. “The Greater Denver Latino Cancer Prevention/Control Network.” Cancer 107 (S8): 2034–2042. doi:10.1002/cncr.22146.
   PubMedGoogle Scholar
• Ford, J. G., M. W. Howerton, G. Y. Lai, T. L. Gary, S. Bolen, M. C. Gibbons, and E. B. Bass. 2008. “Barriers to Recruiting Underrepresented Populations to Cancer Clinical Trials: A Systematic Review.” Cancer 112 (2): 228–242. doi:10.1002/cncr.23157.
   PubMed Web of Science ®Google Scholar
• Fouad, M., A. Acemgil, S. Bae, A. Forero, N. Lisovicz, M. Martin, G. R. Oates, E. E. Partridge, and S. M. Vickers. 2016. “Patient Navigation as a Model to Increase Participation of African Americans in Cancer Clinical Trials.” Journal of Oncology Practice 12 (6): 556–563. doi:10.1200/JOP.2015.008946.
   PubMed Web of Science ®Google Scholar
• Freimuth, V. S., S. C. Quinn, S. B. Thomas, G. Cole, E. Zook, and T. Duncan. 2001. “African Americans’ Views on Research and the Tuskegee Syphilis Study.” Social Science & Medicine 52 (5): 797–808. doi:10.1016/S0277-9536(00)00178-7.
   PubMed Web of Science ®Google Scholar
• Gale, N. K., G. Heath, E. Cameron, S. Rashid, and S. Redwood. 2013. “Using the Framework Method for the Analysis of Qualitative Data in Multi-Disciplinary Health Research.” BMC Medical Research Methodology 13 (117): 1–8. doi:10.1186/1471-2288-13-117.
   PubMed Web of Science ®Google Scholar
• Gillies, K., S. C. Cotton, J. C. Brehaut, M. C. Politi, and Z. Skea. 2015. “Decision Aids for People Considering Taking Part in Clinical Trials.” Cochrane Database of Systematic Reviews 11: 1–40. doi:10.1002/14651858.CD009736.pub2.
   Google Scholar
• Glaser, B. G. 1965. “The Constant Comparative Method of Qualitative Analysis.” Social Problems 12 (4): 436–445.
   Web of Science ®Google Scholar
• Haynes-Maslow, L., P. Godley, L. Dimartino, B. White, J. Odom, A. Richmond, and W. Carpenter. 2014. “African American Women’s Perceptions of Cancer Clinical Trials.” Cancer Medicine 3 (5): 1430–1439. doi:10.1002/cam4.284.
   PubMed Web of Science ®Google Scholar
• Howerton, M. W., M. C. Gibbons, C. R. Baffi, T. L. Gary, G. Y. Lai, S. Bolen, and J. G. Ford. 2007. “Provider Roles in the Recruitment of Underrepresented Populations to Cancer Clinical Trials.” Cancer 109 (3): 465–476. doi:10.1002/cncr.22436.
   PubMed Web of Science ®Google Scholar
• Howlader, N., A. M. Noone, M. Krapcho, N. Neyman, R. Aminou, W. Waldron, and H. Cho. 2011. SEER Cancer Statistics Review, 1975–2008. Vol. 19. Bethesda, MD: National Cancer Institute.
   Google Scholar
• Hudson, S. V., D. Momperousse, and H. Leventhal. 2005. “Physician Perspectives on Cancer Clinical Trials and Barriers to Minority Recruitment.” Cancer Control 12 (Suppl. 2): 293–296.
   Google Scholar
• Jacobsen, P. B., K. J. Wells, C. D. Meade, G. P. Quinn, J. H. Lee, W. J. Fulp, and D. Sullivan. 2012. “Effects of a Brief Multimedia Psychoeducational Intervention on the Attitudes and Interest of Patients with Cancer Regarding Clinical Trial Participation: A Multicenter Randomized Controlled Trial.” Journal of Clinical Oncology 30 (20): 2516–2521. doi:10.1200/JCO.2011.39.5186.
   PubMed Web of Science ®Google Scholar
• Jandorf, L., Z. Bursac, L. Pulley, M. Trevino, A. Castillo, and D. O. Erwin. 2008. “Breast and Cervical Cancer Screening among Latinas Attending Culturally Specific Educational Programs.” Progress in Community Health Partnerships: Research, Education, and Action 2 (3): 195–204. doi:10.1353/cpr.0.0034.
   PubMedGoogle Scholar
• Johnson, D. A., Y. A. Joosten, C. H. Wilkins, and C. A. Shibao. 2015. “Case Study: Community Engagement and Clinical Trial Success: Outreach to African American Women.” Clinical and Translational Science 8 (4): 388–390. doi:10.1111/cts.12264.
   PubMed Web of Science ®Google Scholar
• Knops, A. M., D. A. Legemate, A. Goossens, P. M. Bossuyt, and D. T. Ubbink. 2013. “Decision Aids for Patients Facing a Surgical Treatment Decision: a Systematic Review and Meta-Analysis.” Annals of Surgery 257 (5): 860–866. doi:10.1097/SLA.0b013e3182864fd6.
   PubMed Web of Science ®Google Scholar
• Mannel, R. S., and K. Moore. 2014. “Research: An Event or an Environment?” Gynecologic Oncology 134 (3): 441–442. doi:10.1016/j.ygyno.2014.08.001.
   PubMed Web of Science ®Google Scholar
• Meade, C. D., J. M. Menard, J. S. Luque, D. Martinez-Tyson, and C. K. Gwede. 2011. “Creating Community-Academic Partnerships for Cancer Disparities Research and Health Promotion.” Health Promotion Practice 12 (3): 456–462. doi:10.1177/1524839909341035.
   PubMedGoogle Scholar
• Melisko, M. E., F. Hassin, L. Metzroth, D. H. Moore, B. Brown, K. Patel, and D. Tripathy. 2005. “Patient and Physician Attitudes Toward Breast Cancer Clinical Trials: Developing Interventions Based on Understanding Barriers.” Clinical Breast Cancer 6 (1): 45–54. doi:10.3816/CBC.2005.n.008.
   PubMedGoogle Scholar
• Mills, E. J., D. Seely, B. Rachlis, L. Griffith, P. Wu, K. Wilson, and J. R. Wright. 2006. “Barriers to Participation in Clinical Trials of Cancer: A Meta-Analysis and Systematic Review of Patient-Reported Factors.” The Lancet Oncology 7 (2): 141–148. doi:10.1016/S1470-2045(06)70576-9.
   PubMed Web of Science ®Google Scholar
• Minkler, M. 2005. “Community-based Research Partnerships: Challenges and Opportunities.” Journal of Urban Health: Bulletin of the New York Academy of Medicine 82: ii3–ii12. doi:10.1093/jurban/jti034.
   PubMed Web of Science ®Google Scholar
• Minkler, M., and N. Wallerstein, eds. 2004. Community Based Participatory Research for Health. San Francisco, CA: Jossey-Bass.
   Google Scholar
• Mouton, C. P., S. Harris, S. Rovi, P. Solorzano, and M. S. Johnson. 1997. “Barriers to Black Women’s Participation in Cancer Clinical Trials.” Journal of the National Medical Association 89 (11): 721–727.
   PubMed Web of Science ®Google Scholar
• Murthy, V. H., H. M. Krumholz, and C. P. Gross. 2004. “Participation in Cancer Clinical Trials: Race-, Sex-, and Age-Based Disparities.” Journal of the American Medical Association 291 (22): 2720–2726. doi:10.1001/jama.291.22.2720.
   PubMed Web of Science ®Google Scholar
• National Cancer Institute. 2002. Cancer Clinical Trials: The Basic Workbook. Bethesda, MD: National Cancer Institute.
   Google Scholar
• National Institutes of Health (US). 2001. NIH Policy and Guidelines on the Inclusion of Women and Minorities as Subjects in Clinical Research. Accessed 16 February 2009. http://grants.nih.gov/grants/guide/notice-files/NOT-OD-02-001.html.
   Google Scholar
• Neuman, W. L., and L. Kreuger. 2003. Social Work Research Methods: Qualitative and Quantitative Approaches. Boston, MA: Allyn and Bacon.
   Google Scholar
• O’Brien, M. J., C. H. Halbert, R. Bixby, S. Pimentel, and J. A. Shea. 2010. “Community Health Worker Intervention to Decrease Cervical Cancer Disparities in Hispanic Women.” Journal of General Internal Medicine 25 (11): 1186–1192. doi:10.1007/s11606-010-1434-6.
   PubMed Web of Science ®Google Scholar
• O’Connor, A. M., A. Rostom, V. Fiset, J. Tetroe, V. Entwistle, H. Llewellyn-Thomas, and J. Jones. 1999. “Decision Aids for Patients Facing Health Treatment or Screening Decisions: Systematic Review.” BMJ (Clinical research ed.) 319 (7212): 731–734. doi:10.1136/bmj.319.7212.731.
   PubMed Web of Science ®Google Scholar
• Oh, S. S., J. Galanter, N. Thakur, M. Pino-Yanes, N. E. Barcelo, M. J. White, and L. N. Borrell. 2015. “Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled.” PLoS Medicine 12 (12): 1–9. doi:10.1371/journal.pmed.1001918.
   Web of Science ®Google Scholar
• Patton, M. 1990. Qualitative Evaluation and Research Methods. Newbury Park, CA: Sage.
   Google Scholar
• Quinn, G. P., A. Koskan, K. J. Wells, L. E. Gonzalez, C. D. Meade, C. L. Pratt Pozo, and P. B. Jacobsen. 2012. “Cancer Patients’ Fears Related to Clinical Trial Participation: A Qualitative Study.” Journal of Cancer Education 27 (2): 257–262. doi:10.1007/s13187-012-0310-y.
   PubMed Web of Science ®Google Scholar
• Rivers, D., E. M. August, S. Ivana, B. L. Green, and G. P. Quinn. 2013. “A Systematic Review of the Factors Influencing African Americans’ Participation in Cancer Clinical Trials.” Contemporary Clinical Trials 35 (2): 13–32. doi:10.1016/j.cct.2013.03.007.
   PubMed Web of Science ®Google Scholar
• Sadler, G. R., H.-C. Lee, R. Seung-Hwan Lim, and J. Fullerton. 2010. “Recruiting Hard-to-Reach United States Population Sub-Groups via Adaptations of Snowball Sampling Strategy.” Nursing & Health Sciences 12 (3): 369–374. doi:10.1111/j.1442-2018.2010.00541.x.
   PubMed Web of Science ®Google Scholar
• Schapira, L., and R. Schutt. 2011. “Training Community Health Workers About Cancer Clinical Trials.” Journal of Immigrant and Minority Health 13 (5): 891–898. doi:10.1007/s10903010-9432-7.
   PubMed Web of Science ®Google Scholar
• Seifer, S. D., M. Michaels, and S. Collins. 2010. “Applying Community-Based Participatory Research Principles and Approaches in Clinical Trials: Forging a New Model for Cancer Clinical Research.” Progress in Community Health Partnerships: Research, Education, and Action 4 (1): 37–46. doi:10.1353/cpr.0.0103.
   PubMedGoogle Scholar
• Shalowitz, M. U., A. Isacco, N. Barquin, E. Clark-Kauffman, P. Delger, D. Nelson, and K. A. Wagenaar. 2009. “Community-based Participatory Research: A Review of the Literature with Strategies for Community Engagement.” Journal of Developmental & Behavioral Pediatrics 30 (4): 350–361. doi:10.1097/DBP.0b013e3181b0ef14.
   PubMed Web of Science ®Google Scholar
• Sheikh, A., L. Halani, R. Bhopal, G. Netuveli, M. R. Partridge, J. Car, C. Griffiths, and M. Levy. 2009. “Facilitating the Recruitment of Minority Ethnic People Into Research: Qualitative Case Study of South Asians and Asthma.” PLoS Med 6 (10): e1000148. doi:10.1371/journal/pmed.10000148.
   PubMed Web of Science ®Google Scholar
• Stewart, J., A. Bertoni, J. Staten, E. Levine, and C. P. Gross. 2007. “Participation in Surgical Oncology Clinical Trials: Gender-, Race/Ethnicity-, and age-Based Disparities.” Annals of Surgical Oncology 14 (12): 3328–3334. doi:10.1245/s10434-007-9500-y.
   PubMed Web of Science ®Google Scholar
• Thomas, S. B., M. J. Fine, and S. A. Ibrahim. 2004. “Health Disparities: The Importance of Culture and Health Communication.” American Journal of Public Health 94 (12): 2050. doi:10.2105/AJPH.94.12.2050.
   PubMed Web of Science ®Google Scholar
• Wells, K. J., P. B. Jacobsen, G. P. Quinn, A. Isley, M. Corman, and T. Simson. 2010. Development and Validation of Measures of Patients Perceptions Regarding Cancer Clinical Trials. Denver, CO: American Public Health Association.
   Google Scholar
• Wells, K. J., G. P. Quinn, C. D. Meade, M. Fletcher, D. M. Tyson, H. Jim, and P. B. Jacobsen. 2012. “Development of a Cancer Clinical Trials Multi-media Intervention: Clinical Trials: Are They Right for you?” Patient Education and Counseling 88 (2): 232–240. doi:10.1016/j.pec.2012.03.011.
   PubMed Web of Science ®Google Scholar
• Wendler, D., R. Kington, J. Madans, G. Van Wye, H. Christ-Schmidt, L. A. Pratt, and E. Emanuel. 2005. “Are Racial and Ethnic Minorities Less Willing to Participate in Health Research?” PLoS Medicine 3 (2): e19–e210. doi:10.1371/journal.pmed.0030019.
   PubMed Web of Science ®Google Scholar
• Wujcik, D., and S. N. Wolff. 2010. “Recruitment of African Americans to National Oncology Clinical Trials Through a Clinical Trial Shared Resource.” Journal of Health Care for the Poor and Underserved 21 (1 Suppl): 38–50. doi:10.1353/hpu.0.0251.
   PubMed Web of Science ®Google Scholar