Article
Recruitment and Retention Strategies of African American and Latina American Breast Cancer Survivors in a Longitudinal Psycho-Oncology Study
Purpose/Objectives: To describe recruitment and retention strategies of a psychosocial intervention with African American and Latina American breast cancer survivors (BCSs).
Design: Prospective design with pre- and post-testing.
Setting: A mailed survey and assignment to telephone counseling or education booklet only.
Sample: 587 African American and Latina American BCSs were recruited.
Methods: The sample was drawn from the population-based California cancer and hospital registries, as well as community agencies. Mailed self-report health-related quality-of-life assessments were at baseline and 4-6 months follow-up.
Main Research Variables: Accrual outcomes; recruitment and retention strategies.
Findings: A total of 375 (64%) completed the baseline survey and 320 (55%) completed both baseline and follow-up assessments. The recruitment outcomes suggest that very special attention must be paid to the initial recruitment of Latina Americans to engage their interest and participation. For African Americans, particular attention must be devoted to their retention to address potential attrition.
Conclusions: Findings suggest that the inclusion of lower-income and ethnic minority cancer survivors in a longitudinal intervention study is doable. The results indicate that recruitment outcomes are influenced by participant and study characteristics. Successful enrollment requires investigations that attend to culturally and socioecologically informed recruitment and retention strategies, from staff selection, training, and supervision to overall study approach protocol, to address barriers to participation.
Implications for Nursing: Nursing research and practice have championed survivorship care, including psychosocial care. This article outlines practical strategies to recruit and retain population-based samples, ethnic minorities, and underserved survivors.
Jump to a section
References
Ashing-Giwa, K., Ganz, P. A., & Petersen, L. (1999). Quality of life of African-American and White long term breast carcinoma survivors. Cancer, 85, 418-426.
Ashing-Giwa, K. T. (2005a). Can a culturally responsive model for research design bring us closer to addressing participation disparities? Lessons learned from cancer survivorship studies. Ethnicity and Disease, 15, 130-137.
Ashing-Giwa, K. T. (2005b). The contextual model of HRQoL: A paradigm for expanding the HRQOL framework. Quality of Life Research, 14, 297-307. doi:10.1007/s11136-004-0729-7
Ashing-Giwa, K. T. (2008). Enhancing physical well-being and overall quality of life among underserved Latina-American cervical cancer survivors: Feasibility study. Journal of Cancer Survivorship, 2, 215-223.
Ashing-Giwa, K. T., & Lim, J. (2008). Predicting health-related quality of life: Testing the Contextual Model using structural equation modeling. Applied Research in Quality of Life, 3, 215-230. doi:10.1007/s11482-009-9057-y
Ashing-Giwa, K. T., Padilla, G. V., Tejero, J. S., & Kim, J. (2004). Breast cancer survivorship in a multiethnic sample: Challenges in recruitment and measurement. Cancer, 101, 450-465. doi:10.1002/cncr.20370
Ashing-Giwa, K. T., Tejero, J. S., Kim, J., Padilla, G. V., & Hellemann, G. (2007). Examining predictive models of HRQOL in a population-based, multiethnic sample of women with breast carcinoma. Quality of Life Research, 16, 413-428. doi:10.1007/s11136-006-9138-4
Ashing-Giwa, K. T., Tejero, J. S., Kim, J., Padilla, G. V., Kagawa-Singer, M., Tucker, M. B., & Lim, J. W. (2009). Cervical cancer survivorship in a population based sample. Gynecologic Oncology, 112, 358-364. doi:10.1016/j.ygyno.2008.11.002
Baquet, C. R., Ellison, G. L., & Mishra, S. I. (2009). Analysis of Maryland cancer patient participation in National Cancer Institute-supported cancer treatment clinical trials. Journal of Health Care for the Poor and Underserved, 20, 120-134.
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(8, Suppl.), S13-S21. doi:10.1016/S1047-2797(00)00197-6
Cella, D. (1997). FACIT manual: Manual of the Functional Assessment of Chronic Illness Therapy (FACIT) measurement system. Evanston, IL: Center on Outcomes, Research and Education.
Comis, R. L., Miller, J. D., Aldigé, C. R., Krebs, L., & Stoval, E. (2003). Public attitudes toward participation in cancer clinical trials. Journal of Clinical Oncology, 21, 830-835. doi:10.1200/JCO.2003.02.105
Du, H., Valenzuela, V., Diaz, P., Cella, D., & Hahn, E. A. (2008). Factors affecting enrollment in literacy studies for English- and Spanish-speaking cancer patients. Statistics in Medicine, 27, 4119-4131. doi:10.1002/sim.3259
Du, W., Mood, D., Gadgeel, S., & Simon, M. S. (2009). An educational video to increase clinical trials enrollment among breast cancer patients. Breast Cancer Research and Treatment, 117, 339-347.
Eakin, E. G., Bull, S. S., Riley, K., Reeves, M. M., Gutierrez, S., & McLaughlin, P. (2007). Recruitment and retention of Latinos in a primary care-based physical activity and diet trial: The Resources for Health study. Health Education Research, 22, 361-371. doi:10.1093/her/cyl095
Ellish, N. J., Scott, D., Royak-Schaler, R., & Higginbotham, E. J. (2009). Community-based strategies for recruiting older, African Americans into a behavioral intervention study. Journal of the National Medical Association, 101, 1104-1111.
Evelyn, B., Toigo, T., Banks, D., Pohl, D., Gray, K., Robins, B., & Ernat, J. (2001). Participation of racial/ethnic groups in clinical trials and race-related labeling: A review of new molecular entities approved 1995-1999. Journal of the National Medical Association, 93(12, Suppl.), 18S-24S.
Farmer, D. F., Jackson, S. A., Camacho, F., & Hall, M. A. (2007). Attitudes of African American and low socioeconomic status White women toward medical research. Journal of Health Care for the Poor and Underserved, 18, 85-99. doi:10.1353/hpu.2007.0008
Ford, J. G., Howerton, M. W., Bolen, S., Gray, 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, 122, 1-11.
Ford, J. G., Howerton, M. W., Lai, G. Y., Gary, T. L., Bolen, S., Gibbons, M. C., … Bass, E. B. (2008). Barriers to recruiting underrepresented populations to cancer clinical trials: A systematic review. Cancer, 112, 228-242. doi:10.1002/cncr.23157
Galea, S., & Tracy, M. (2007). Participation rates in epidemiologic studies. Annals of Epidemiology, 17, 643-653.
Giuliano, A. R., Mokuau, N., Hughes, C., Tortolero-Luna, G., Risendal, B., Ho, R. C. S., … McCaskill-Stevens, W. J. (2000). Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors. Annals of Epidemiology, 10(8, Suppl. 1), S22-S34. doi:10.1016/S1047-2797(00)00195-2
Hahn, E. A., & Cella, D. (2003). Health outcomes assessment in vulnerable populations: Measurement challenges and recommendations. Archives of Physical Medicine and Rehabilitation, 84(4, Suppl. 2), S35-S42. doi:10.1053/apmr.2003.50245
Hahn, E. A., Du, H., Garcia, S. F., Choi, S. W., Lai, J. S., Victorson, D., & Cella, D. (2010). Literacy-fair measurement of health-related quality of life will facilitate comparative effectiveness research in Spanish-speaking cancer outpatients. Medical Care, 48(6, Suppl.), S75-S82. doi:10.1097/MLR.0b013e3181d6f81b
Hatchett, B. F., Holmes, K., Duran, D. A., & Davis, C. (2000). African Americans and research participation: The recruitment process. Journal of Black Studies, 30, 664-675. doi:10.1177/002193470003000502
Hays, R. D., Sherbourne, C. D., & Mazel, R. M. (1993). The RAND 36-Item Health Survey 1.0. Health Economics, 2, 217-227. doi:10.1002/hec.4730020305
Hays, R. D., Sherbourne, C. D., & Mazel, R. M. (1995). User's manual for the Medical Outcomes Study (MOS) Core Measures of Health-Related Quality of Life. Retrieved from http://www.rand.org/pubs/monograph_reports/MR162.html
Hiatt, R. A., Pasick, R. J., Stewart, S., Bloom, J., Davis, P., Gardiner, P., … Stroud, F. (2001). Community-based cancer screening for underserved women: Design and baseline findings from the Breast and Cervical Cancer Intervention Study. Preventive Medicine, 33, 190-203. doi:10.1006/pmed.2001.0871
Holmbeck, G. N. (1997). Toward terminological, conceptual, and statistical clarity in the study of mediators and moderators: Examples from the child-clinical and pediatric psychology literatures. Journal of Consulting and Clinical Psychology, 65, 599-610. doi:10.1037/0022-006X.65.4.599
Institute of Medicine. (2008). Cancer care for the whole patient: Meeting psychosocial health needs. Washington, DC: National Academies Press.
Institute of Medicine. (2009). Review and assessment of the National Institutes of Health's strategic research plan to reduce and ultimately eliminate health disparities. Retrieved from http://iom.edu/Activities/SelectPops/HlthDisparResNIH.aspx
Levkoff, S., & Sanchez, H. (2003). Lessons learned about minority recruitment and retention from Centers on Minority Aging and Health Promotion. Gerontologist, 43(1), 18-26. doi:10.1093/geront/43.1.18
MacKinnon, D. P., & Fairchild, A. J. (2009). Current directions in mediation analysis. Current Directions in Psychological Science, 18(1), 16.doi:10.1111/j.1467-8721.2009.01598.x
McCorkle, R., Tang, S. T., Greenwald, H., Holcombe, G., & Lavery, M. (2006). Factors related to depressive symptoms among long-term survivors of cervical cancer. Health Care for Women International, 27(1), 45-58. doi:10.1080/07399330500377507
McIlvane, J. M., Baker, T. A., Mingo, C. A., & Haley, W. E. (2008). Are behavioral interventions for arthritis effective with minorities? Addressing racial and ethnic diversity in disability and rehabilitation. Arthritis and Rheumatism, 59, 1512-1518. doi:10.1002/art.24117
Mishel, M. H., Germino, B. B., Gil, K. M., Belyea, M., Laney, I. C., Stewart, J., … Clayton, M. (2005). Benefits from an uncertainty management intervention for African-American and Caucasian older long-term breast cancer survivors. Psycho-Oncology, 14, 962-978. doi:10.1002/pon.909
Moreno-John, G., Gachie, A., Flemming, C. M., Nápoles-Springer, A., Mutran, E., Manson, S. M., & Pérez-Stable, E. J. (2004). Ethnic minority older adults participating in clinical research: Developing trust. Journal of Aging Health, 16(5, Suppl.), 93S-123S. doi:10.1177/0898264304268151
National Institutes of Health. (2001). NIH policy and guidelines on the inclusion of women and minorities as subjects in clinical research. Retrieved from http://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm
Nicholson, W. K., Brown, A. F., Gathe, J., Grumbach, K., Washington, A. E., & Pérez-Stable, E. J. (1999). Hormone replacement therapy for African American women: Missed opportunities for effective intervention. Menopause, 6(2), 147-155.
Portillo, C. J., Villarruel, A., de Leon Siantz, M. L., Peragallo, N., Calvillo, E. R., & Eribes, C. M. (2001). Research agenda for Hispanics in the United States: A nursing perspective. Nursing Outlook, 49, 263-269. doi:10.1067/mno.2001.119691
Powell, J. H., & Fleming, Y. (2000). Making medicines for America: The case for clinical trial diversity. Journal of the National Medical Association, 92, 507-514.
Sandgren, A. K., & McCaul, K. D. (2003). Short-term effects of telephone therapy for breast cancer patients. Health Psychology, 22, 310-315. doi:10.1037/0278-6133.22.3.310
Schmotzer, G. L. (2012). Barriers and facilitators to participation of minorities in clinical trials. Ethnicity and Disease, 22, 226-230.
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. doi:10.1016/S1047-2797(01)00265-4.
Stark, N., Paskett, E., Bell, R., Cooper, M. R., Walker, E., Wilson, A., & Tatum, C. (2002). Increasing participation of minorities in cancer clinical trials: Summary of the "Moving Beyond the Barriers" conference in North Carolina. Journal of the National Medical Association, 94, 31-39. doi:10.1016/S1047-2797(01)00265-4
Stull, V. B., Snyder, D. C., & Demark-Wahnefried, W. (2007). Lifestyles intervention in cancer survivors: Designing programs that meet the needs of this vulnerable and growing population. Journal of Nutrition, 137(1, Suppl.), 243S-248S.
Topp, R., Newman, J. L., & Jones, V. F. (2008). Including African Americans in health care research. Western Journal of Nursing Research, 30, 197-203. doi:10.1177/0193945907303063
U. S. Census Bureau. (2012). USA QuickFacts. Retrieved from doi http://quickfacts.census.gov/qfd/states/00000.html
Wendler, D., Kington, R., Madans, J., Van Wye, G., Christ-Schmidt, H., Pratt, L. A., … Emanuel, E. (2006). Are racial and ethnic minorities less willing to participate in health research? PLoS Med, 3(2), e19. doi:10.1371/journal.pmed.0030019
Yancey, A. K., Ortega, A. N., & Kumanyika, S. K. (2006). Effective recruitment and retention of minority research participants. Annual Review of Public Health, 27, 1-28.