Recruiting low-income healthy women to research: An exploratory study

Ethnicity and Health

Volumn 12, Issue 5, 2007, Pages 497-519

  Joseph, Galen ^a   Kaplan, Celia P ^b   Pasick, Rena J ^a  

^a UNIVERSITY OF CALIFORNIA   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

Author keywords

African American; Clinical Trials; Gender; Latino; Telephone Recruitment

Indexed keywords

HEALTH SERVICES; LOW INCOME POPULATION; PARTICIPATORY APPROACH; RECRUITMENT; RESEARCH WORK; WOMENS HEALTH;

ADULT; AFRICAN AMERICAN; ARTICLE; EXPLORATORY RESEARCH; FEASIBILITY STUDY; FEMALE; HISPANIC; HUMAN; LOWEST INCOME GROUP; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATICS; MEDICAL RESEARCH; PATIENT ATTITUDE; PATIENT PARTICIPATION; PATIENT REFERRAL; PATIENT SELECTION; QUALITATIVE RESEARCH; QUESTIONNAIRE; REFUSAL TO PARTICIPATE; SEMI STRUCTURED INTERVIEW; SEX DIFFERENCE; TELEPHONE;

ADULT; AFRICAN AMERICANS; CALIFORNIA; CLINICAL TRIALS AS TOPIC; COMMUNICATION; FEASIBILITY STUDIES; FEMALE; HISPANIC AMERICANS; HUMANS; INTERPERSONAL RELATIONS; MALE; MEN; MIDDLE AGED; PATIENT SELECTION; PILOT PROJECTS; POVERTY; QUALITATIVE RESEARCH; SEX FACTORS; SOCIAL CLASS; SOCIAL JUSTICE; SOCIOECONOMIC FACTORS; TELEPHONE; WOMEN;

AFRICA;

EID: 35848935234     PISSN: 13557858     EISSN: 14653419     Source Type: Journal    
DOI: 10.1080/13557850701616961     Document Type: Article

References (65)

1. Adams-Campbell, L. L., Ahaghotu, C., Gaskinks, M., Dawkins, F. W., Smoot, D., Polk, O. D., Gooding, R. & DeWitty, R. L. (2004) 'Enrollment of African Americans onto clinical treatment trials: study design barriers', Journal of Clinical Oncology, vol. 22, no. 4, pp. 730-734.
2. Avenell, A., Grant, A. M., McGee, M., McPherson, G., Campbell, M. K. & McGee, M.A. (2004) 'The effects of an open design on trial participant recruitment, compliance and retention - a randomized controlled trial comparison with a blinded, placebo-controlled design', Clinical Trials, vol. 1, pp. 490-498.
3. Bull, M. J. (2001) 'Interventions for women as family caregivers', Annual Review of Nursing Research, vol. 19, pp. 125-142.
4. Burke, W., Beeker, C., Kraft, J. M. & Pinsky, L. (2000) 'Engaging women's interest in colorectal cancer screening: a public health strategy', Journal of Women's Health & Gender-based Medicine, vol. 9, no. 4, pp. 363-371.
5. Burroughs, A. R., Visscher, W. A., Haney, T. L., Efland, J. R., Barefoot, Williams, R. B., Jr. & Siegler, I. C. (2003) 'Community recruitment process by race, gender, and SES gradient: lessons learned from the Community Health and Stress Evaluation (CHASE) Study experience', Journal of Community Health, vol. 28, no. 6, pp. 421-437.
6. California Department of Health Services (2001) Cancer in California: 1988-1999, Cancer Surveillance Section.
7. California Department of Health Services (2004) Fact Sheet: Prostate Cancer, Cancer Detection Section.
8. Christian, M. & Trimble, E. (2003) 'Increasing participation of physicians and patients from underrepresented racial and ethnic groups in National Cancer Institute-sponsored clinical trials', Cancer Epidemiology, Biomarkers & Prevention, vol. 12, pp. 277s-283s.
9. Cook, E. D., Moody-Thomas, S., Anderson, K. B., Campbell, R., Hamilton, S. J., Harrington, J. M., Lippman, S. M., Minasian, L. M., Paskett, E. D., Craine, S., Arnold, K. B. & Probstfield, J. L. (2005) 'Minority recruitment to the Selenium and Vitamin E Cancer Prevention Trial (SELECT)', Clinical Trials, vol. 2, no. 5, pp. 436-442.
10. Corbie-Smith, G., St. George, D. M., Moody-Ayres, S. & Ransohoff, D. F. (2003) 'Adequacy of reporting race/ethnicity in clinical trials in areas of health disparities', Journal of Clinical Epidemiology, vol. 56, no. 5, pp. 416-420.
11. Darrow, S. L., Speyer, J., Marcus, A. C., Ter Maat, J. & Krome, D. (1998) 'Coping with cancer: the impact of the Cancer Information Service on patients and significant others. Part 6', Journal of Health Communication, vol. 3 Supplement, pp. 86-96.
12. Davis, S., Stewart, S. & Bloom, J. (2004) 'Increasing the accuracy of perceived breast cancer risk: results from a randomized trial with Cancer Information Service callers', Preventive Medicine, vol. 39, no. 1, pp. 64-73.
13. Epstein, S. (2004) 'Bodily differences and collective identities: the politics of gender and race in biomedical research in the United States', Body & Society, vol. 10, no. 1-3, pp. 183-203.
14. Ford, L. G., Minasian, L. M., McCaskill-Stevens, W., Pisano, E. D., Sullivan, D. & Smith, R. A. (2003a) 'Prevention and early detection clinical trials: opportunities for primary care providers and their patients', CA: A Cancer Journal for Clinicians, vol. 53, no. 2, pp. 82-101.
15. Ford, M. E., Havstad, S. L. & Tilley, B. C. (2003b) 'Recruiting older African American men to a cancer screening trial (the AAMEN Project)', The Gerontologist, vol. 43, no. 1, pp. 27-35.
16. Ford, M. E., Havstad, S. L. & Davis, S. D. (2004) 'A randomized trial of recruitment methods for older African American men in the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial', Clinical Trials, vol. 1, no. 4, pp. 343-351.
17. Frayne, S. M., Mancuso, M., Prout, M. N. & Freund, K. M. (2001) 'Attitudes of primary care physicians toward cancer-prevention trials: a focus group analysis', Journal of the National Medical Association, vol. 93, no. 11, pp. 450-457.
18. Freimuth, V. S., Quinn, S. C., Thomas, S. B., Cole, G., Zook, E. & Duncan, T. (2001) 'African Americans' views on research and the Tuskegee Syphilis Study', Social Science & Medicine, vol. 52, no. 5, pp. 797-808.
19. Gail, M. H. & Benichou, J. (1992) 'Assessing the risk of breast cancer in individuals', in Cancer Prevention, eds De Vita, V. T. Jr, Hellman, S. & Rosenberg, S. A., Lippincott, Philadelphia, pp. 1-15.
20. Glaser, B. G. (1978) Theoretical Sensitivity: Advances in Methodology of Grounded Theory, The Sociology Press, Mill Valley.
21. Gilliss, C. L., Lee, K. A., Gutierrez, Y., Taylor, D., Beyene, Y., Neuhaus, J. & Murrell, N. (2001) 'Recruitment and retention of healthy minority women into community-based longitudinal research', Journal of Women's Health & Gender-based Medicine, vol. 10, no. 1, pp. 77-85.
22. Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R. C., Prewitt, T. E. & McCaskill-Stevens, W. J. (2000) 'Participation of minorities in cancer research: the influence of structural, cultural, and linguistic factors', Annals of Epidemiology, vol. 10, no. 8 Supplement 1, pp. S22-S34.
23. Grandison, D. (2006) 'Participation of minorities in research and clinical trials', in Multicultural Medicine and Health Disparities, eds D. Satcher & R. Pamies, McGraw-Hill, New York, pp. 449-458.
24. Grann, V. R., Jacobson, J. S., Troxel, A. B., Hershman, D., Karp, J., Myers, C. & Neugut, A. I. (2005) 'Barriers to minority participation in breast carcinoma prevention trials', Cancer, vol. 104, no. 2, pp. 374-379.
25. 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, vol. 103, no. 3, pp. 483-491.
26. Grunfeld, E. L., Zitzelsberger, L., Coristine, M. & Aspelund, F. (2002) 'Barriers and facilitators to enrollment in cancer clinical trials: qualitative study of the perspectives of clinical research associates', Cancer, vol. 95, no. 7, pp. 1577-1583.
27. Guberman, N. P., Maheu, P. & Maill, C. (1992) 'Women as family caregivers: why do they care?', The Gerontologist, vol. 32, no. 5, pp. 607-617.
28. Heimendinger, J., O'Neill, C., Marcus, A. C., Wolfe, P., Julesburg, K., Morra, M., Allen, A., Davis, S., Mowad, L., Perocchia, R. S., Ward, J. D., Strecher, V., Warnecke, R., Nowak, M., Graf, I., Fairclough, D., Bryant, L. & Lipkus, I. (2005) 'Multiple tailored messages are effective in increasing fruit and vegetable consumption among callers to the Cancer Information Service', Journal of Health Communication, vol. 10, Suppl. 1, pp. 65-82.
29. Higgins, B. & Thompson, I. M. (2004) 'The Prostate Cancer Prevention Trial: current status', Journal of Urology, vol. 171, no. 2 Part 2, pp. S15-17.
30. Hoffman, R. M., Gilliland, F. D., Eley, J. W., Harlan, L. C., Stephenson, R. A., Stanford, J. L., Albertson, P. C., Hamilton, A. S., Hunt, W. C. & Potosky, A. L. (2001) 'Racial and ethnic differences in advanced-stage prostate cancer: the Prostate Cancer Outcomes Study', Journal of the National Cancer Institute, vol. 93, no. 5, pp. 388-395.
31. Hudson, S. V., Momperousse, D. & Leventhal, H. (2005) 'Physician perspectives on cancer clinical trials and barriers to minority recruitment', Cancer Control, vol. 12 Supplement 2, pp. 93-96.
32. Hussain-Gambles, M., Atkin, K. & Leese, B. (2004) 'Why ethnic minority groups are under-represented in clinical trials: a review of the literature', Health & Social Care in the Community, vol. 12, no. 5, pp. 382-388.
33. Hussain-Gambles, M., Atkin, K. & Leese, B. (2006) 'South Asian participation in clinical trials: the views of lay people and health professionals', Health Policy, vol. 77, pp. 149-165.
34. Jolly, K., Lip, G. Y., Taylor, R. S., Mant, J. W., Lane, D. A., Lee, K. W. & Stevens, A. J. (2005) 'Recruitment of ethnic minority patients to a cardiac rehabilitation trial: the Birmingham Rehabilitation Uptake Maximisation (BRUM) study [IRSCTN72884263]', BMC Medical Research Methodology, vol. 5, no. 18, pp. 1-6. Available at: http://www.biomedcentral.com/1471-2288/5/18 (accessed 1 August 2006).
35. Kaas, R., Hart, A. A. & Rutgers, E. J. (2005) 'The impact of the physician on the accrual to randomized clinical trials in patients with primary operable breast cancer', Breast, vol. 14, no. 4, pp. 310-316.
36. Killien, M., Bigby, J. A., Champion, V., Fernandez-Repollet, E., Jackson, R. D., Kagawa-Singer, M., Kidd, K., Naughton, M. J. & Prout, M. (2000) 'Involving minority and underrepresented women in clinical trials: the National Centers of Excellence in Women's Health', Journal of Women's Health & Gender-based Medicine, vol. 9, no. 10, pp. 1061-1070.
37. Kinney, A. Y., Richards, C., Vernon, S. W. & Vogel, V. G. (1998) 'The effect of physician recommendation on enrollment in the Breast Cancer Chemoprevention Trial', Preventive Medicine, vol. 27, no. 5 Part 1, pp. 713-719.
38. Klabunde, C. N. & Kaluzny, A. D. (1995) 'Accrual to the Breast Cancer Prevention Trial by participating community clinical oncology programs: a panel data analysis', Breast Cancer Research & Treatment, vol. 35, no. 1, pp. 43-50.
39. Lara, P. N. Jr., Higdon, R., Lim, N., Kwan, K., Tanaka, M., Lau, D. H., Wun, T., Welborn, J., Meyers, F. J., Christensen, S., O'Donnell, R., Richman, C., Scudder, S. A., Tuscano, J., Gandara, D. R. & Lam, K. S. (2001) 'Prospective evaluation of cancer clinical trial accrual patterns: identifying potential barriers to enrollment', Journal of Clinical Oncology, vol. 19, no. 6, pp. 1728-1733.
40. Lippman, S. M., Goodman, P. J., Klein, E. A., Parnes, H. L., Thompson, I. M. Jr., Kristal, A. R., Santella, R. M., Probstfield, J. L., Moinpiur, C. M., Albanes, D., Taylor, P. R., Minasian, L. M., Hoque, A., Thomas, S. M., Crowley, J. J., Gaziano, J. M., Stanford, J. L., Cook, E. D., Fleshner, N. E., Lieber, M. M., Walther, P. J., Khuri, F. R., Karp, D. D., Schwartz, G. G., Ford, L. G. & Coltman, C. A. Jr. (2005) 'Designing the Selenium and Vitamin E Cancer Prevention Trial (SELECT)', Journal of the National Cancer Institute, vol. 97, no. 2, pp. 94-102.
41. Marcus, A. C., Mason, M., Wolfe, P., Rimer, B. K., Lipkus, I., Strecher, V., Warneke, R., Morra, M. E., Allen, A. R., Davis, S. W., Gaier, A., Graves, C., Julesberg, K., Nguyen, L., Perocchia, R., Speyer, J. B., Wagner, D., Thomsen, C. & Bright, M. A. (2005) 'The efficacy of tailored print materials in promoting colorectal cancer screening: results from a randomized trial involving callers to the National Cancer Institute's Cancer Information Service', Journal of Health Communication, vol. 10 Supplement 1, pp. 83-104.
42. McCaskill-Stevens, W., McKinney, M. M., Whitman, C. G. & Minasian, L. M. (2005) 'Increasing minority participation in cancer clinical trials: the minority-based community clinical oncology program experience', Journal of Clinical Oncology, vol. 23, no. 22, pp. 5247-5254.
43. McDaid, C., Hodges, Z., Fayter, D., Stirk, L. & Eastwood, A. (2006) 'Increasing participation of cancer patients in randomised controlled trials: a systematic review', Trials, vol. 7, no. 16. Available at: http://www.trialsjournal.com/content/7/1/16 (accessed 1 August 2006).
44. Miller, S. M., Fleisher, L., Roussi, P., Buzaglo, J. S., Schnoll, R., Slater, E., Raysor, S. & Popa-Mabe, M. (2005) 'Facilitating informed decision making about breast cancer risk and genetic counseling among women calling the NCI's Cancer Information Service', Journal of Health Communication, vol. 10 Supplement 1, pp. 119-136.
45. Moinpour, C. M., Atkinson, J. O., Thomas, S. M., Underwood, S. M., Harvey, C., Parzuchowski, J., Lovato, L. C., Ryan, A. M., Hill, M. S., Deantoni, E., Gritz, E. R., Thompson, I. M. & Coltman, C. A. (2000) 'Minority recruitment in the Prostate Cancer Prevention Trial', Annals of Epidemiology, vol. 10, no. 8 Supplement 1, pp. S85-S91.
46. Moreno-John, G., Gachie, A., Fleming, C. M., Napoles-Springer, A., Mutran, E., Manson, S. M. & Perez-Stable, E. J. (2004) 'Ethnic minority older adults participating in clinical research: developing trust', Journal of Aging & Health, vol. 16, no. 5 Supplement, pp. 93S-123.
47. Murthy, V. H., Krumholz, H. M. & Gross, C. P. (2004) 'Participation in cancer clinical trials: race-, sex-, and age-based disparities', Journal of the American Medical Association, vol. 291, no. 22, pp. 2720-2726.
48. Neal, M. B., Ingersoll-Dayton, B. & Starrels, M. E. (1997) 'Gender and relationship differences in caregiving patterns and consequences among employed caregivers', The Gerontologist, vol. 37, no. 6, pp. 804-816.
49. Ruffin, M. I. & Baron, J. (2000) 'Recruiting subjects in cancer prevention and control studies', Journal of Cellular Biochemistry, vol. 77, no. 34 Supplement, pp. 80-83.
50. Sandelowski, M. (1986) 'The problem of rigor in qualitative research', Advances in Nursing Science, vol. 8, pp. 27-37.
51. Shavers, V. L., Lynch, C. F. & Burmeister, L. F. (2000) 'Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies', Journal of the National Medical Association, vol. 92, no. 12, pp. 563-572.
52. Sheppard, V. D., Cox, L. S., Kanamori, M. J., Canar, J., Rodriguez, Y., Goodman, M., Pomeroy, J., Mandelblatt, J. & Huerta, E. E. (2005) 'Brief report: if you build it, they will come: methods for recruiting Latinos into cancer research', Journal of General Internal Medicine, vol. 20, no. 5, pp. 444-447.
53. Stallings, F. L., Ford, M. E., Simpson, N. K., Fouad, M., Jernigan, J. C., Trauth, J. M. & Miller, D. S. (2000) 'Black participation in the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Trial', Controlled Clinical Trials, vol. 21, no. 6, Supplement, pp. 379S-389.
54. Stanford, J. L., Stephenson, R. A., Coyle, L. M., Cerhan, J., Correa, R., Eley, J. W., Gilliland, F., Hankey, B., Kolonel, L. N., Kosary, C., Ross, R., Serveron, R. & West, D. (1999) 'Incidence and Mortality in Prostate Cancer Trends 1973-1995', SEER Program, National Cancer Institute, NIH Pub. No. 99-4543, Bethesda, MD.
55. Strecher, V. J., Marcus, A., Bishop, K., Fleisher, L., Stengle, W., Levinson, A., Fairclough, D. L., Wolfe, P., Morra, M., Davis, S., Warnecke, R., Heimendinger, J. & Nowak, M. (2005) 'A randomized controlled trial of multiple tailored messages for smoking cessation among callers to the cancer information service', Journal of Health Communication, vol. 10, Supplement 1, pp. 105-118.
56. Swanson, G. M. & Ward, A. J. (1995) 'Recruiting minorities into clinical trials: toward a participant-friendly system', Journal of the National Cancer Institute, vol. 87, no. 23, pp. 1747-1759.
57. Swanson, G. M. & Bailar, J. C. 3rd (2002) 'Selection and description of cancer clinical trials participants - science or happenstance?' Cancer, vol. 95, no. 5, pp. 950-959.
58. Tangrea, J. A. (1997) 'Patient participation and compliance in cancer chemoprevention trials: issues and concerns', Proceedings of the Society for Experimental Biology and Medicine, vol. 216, no. 2, pp. 260-265.
59. Ulin, P. R. E., Robinson, E. T. & Tolley, E. E. (2005) Qualitative Methods in Public Health: A Field Guide for Applied Research, Jossey-Bass, San Francisco, CA.
60. Umberson, D. (1992) 'Gender, marital status and the social control of health behavior', Social Science & Medicine, vol. 34, no. 8, pp. 907-917.
61. Wendler, D., Kington, R., Madans, J., Wye, G. V., Christ-Schmidt, H., Pratt, L. A., Brawley, O. W., Gross, C. P. & Emanuel, E. (2005) 'Are racial and ethnic minorities less willing to participate in health research?' PLoS Medicine, vol. 3, no. 2, p. e19.
62. Witte, S. S., El-Bassel, N., Gilbert, L., Wu, E., Chang, M. & Steinglass, P. (2004) 'Recruitment of minority women and their main sexual partners in an HIV/STI prevention trial', Journal of Women's Health, vol. 13, no. 10, pp. 1137-1147.
63. Woods, V. D., Montgomery, S. B. & Herring, R. P. (2004) 'Recruiting Black/African American men for research on prostate cancer prevention', Cancer, vol. 100, no. 5, pp. 1017-1025.
64. Zhu, K., Hunter, S., Bernard, L. J., Payne-Wilks, K., Roland, C. L. & Levine, R. S. (2000) 'Recruiting elderly African-American women in cancer prevention and control studies: a multifaceted approach and its effectiveness', Journal of the National Medical Association, vol. 92, no. 4, pp. 169-175.
65. Zietman, A., Moughan, J., Owen, J. & Hanks, G. (2001) 'The Patterns of Care Survey of radiation therapy in localized prostate cancer: similarities between the practice nationally and in minority-rich areas', International Journal of Radiation Oncology, Biology, & Physics, vol. 50, no. 1, pp. 75-80.