Abstract
Purpose
To better understand research participation among hard-to-reach populations, this exploratory investigation examined characteristics of enrollees and non-enrollees from a population-based longitudinal study with African-American and Latina-American breast cancer survivors.
Methods
A mixed-method recruitment approach was utilized to enroll participants from cancer registries and community groups who were 1–6 years post-diagnosis.
Results
Four hundred and sixty-eight participants agreed to participate constituting an 81 % participation rate; 65 and 55 % completed Time-1, and both Time-1 and Time-2 assessments, respectively. African-Americans were more likely to agree to participate and complete the T1 assessment (73 %) than Latinas (62 %) (p < 0.05). Participation was influenced by educational attainment and comorbidities (p < 0.05) for African-Americans. Among Latinas, language proficiency, comorbidities and psychological difficulties (p < 0.01) influenced participation.
Conclusions
Our findings suggest that enrollment in research studies may be influenced by complex and multi-dimensional factors stemming from subjects’ characteristics including ethnicity, culture, language proficiency and literary, and socioeconomic status, as well as medical characteristics including co-occurring chronic illness and psychological status. Thus, comprehensive, multi-method research studies are urgently needed to better understand and address the challenge of minority recruitment in biomedical research. To increase research participation among cancer survivors, it is imperative to implement focused strategies that will support and encourage individuals’ enrollment and continued participation in studies.
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References
Lindenberg, C. S., et al. (2001). Challenges and strategies for conducting intervention research with culturally diverse populations. Journal of Transcultural Nursing, 12(2), 132–139.
Du, H., et al. (2008). Factors affecting enrollment in literacy studies for English- and Spanish-speaking cancer patients. Statistics in Medicine, 27, 4119–4131.
Moorman, P. G., et al. (1999). Participation rates in a case-control study: The impact of age, race, and race of interviewer. Annals of Epidemiology, 9(3), 188–195.
Sears, S. R., et al. (2003). Recruitment and retention challenges in breast cancer survivorship research: Results from a multisite, randomized intervention trial in women with early stage breast cancer. Cancer Epidemiology Biomarkers & Prevention, 12, 1087–1090.
Janson, S. L., Alioto, M. E., & Boushey, H. A. (2001). Attrition and retention of ethnically diverse subjects in a multicenter randomized controlled research trial. Controlled Clinical Trials, 22, 236S–243S.
Gul, R. B., & Ali, P. A. (2010). Clinical trials: The challenge of recruitment and retention of participants. Journal of Clinical Nursing, 19(1–2), 227–233.
Evelyn, B., et al. (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), 18S–24S.
Giuliano, A. R., et al. (2000). Participation of minorities in cancer research: The influence of structural, cultural, and linguistic factors. Annals of Epidemiology, 10(8, Supplement 1), S22–S34.
Moreno-John, G., et al. (2004). Ethnic minority older adults participating in clinical research: Develo** trust. Journal of Aging Health, 16(5), 93S–123S.
Galea, S., & Tracy, M. (2007). Participation rates in epidemiologic studies. Annals of Epidemiology, 17, 643–653.
Institute of Medicine. (1999). The unequal burden of cancer: An assessment of NIH research and programs for ethnic minorities and the medically underserved. Washington, DC: National Academy Press.
Link, M., et al. (2006). Race, ethnicity, and linguistic isolation as determinants of participation in public health surveillance surveys. Preventing Chronic Disease, 3(1), A09.
Sateren, W. B., et al. (2002). How sociodemographics, presence of oncology specialists, and hospital cancer programs affect accrual to cancer treatment trials. Journal of Clinical Oncology, 20(8), 2109–2117.
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(4), 248–256.
Paasche-Orlow, M. K., et al. (2005). The prevalence of limited health literacy. Journal of General Internal Medicine, 20(2), 175–184.
Ashing-Giwa, K., et al. (2004). Breast cancer survivorship in a multiethnic sample: Challenges in recruitment and measurement. Cancer, 101(3), 460–465.
Ashing-Giwa, K., et al. (2007). Examining predictive models of HRQOL in a population-based, multiethnic sample of women with breast carcinoma. Quality of Life Research, 16(3), 413–428.
Ford, J., et al. (2005). Knowledge and access to information on recruitment of underrepresented population to cancer clinical trials. In Evidence report/technology assessment (summary) (pp. 1–11).
Bureau, U. C. (2012). 2012 National population projections: International migration series. http://www.census.gov/population/projections/data/national/2012/downloadablefiles.html.
Adams, P. F., & Barnes, P. M. (2006). Summary health statistics for the US population: National Health Interview Survey, 2004. Vital and Health Statistics, 10(229), 1–104.
Centers for Disease Control and Prevention. (2005). Behavioral Risk Factor Surveillance System: 2005 summary data quality report. http://www.cdc.gov/brfss/technical_infodata/2005QualityReport.htm. Accessed January 10, 2011.
Kessler, R. C., et al. (2004). The US National Comorbidity Survey Replication (NCS-R): Design and field procedures. International Journal of Methods in Psychiatric Research, 13, 69–92.
Brewster, W. R., et al. (2002). Recruitment strategies for cervical cancer prevention study. Gynecologic Oncology, 85, 250–254.
Hiatt, R. A., et al. (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.
McIlvane, J. M., et al. (2008). Are behavioral interventions for arthritis effective with minorities? Addressing racial and ethnic diversity in disability and rehabilitation. Arthritis and Rheumatism, 59(10), 1512–1518.
Sandgren, A. K., & McCaul, K. D. (2003). Short-term effects of telephone therapy for breast cancer patients. Health Psychology, 22, 310–315.
Ashing-Giwa, K. (2005). Can a culturally responsive model for research design bring us closer to addressing participation disparities? Ethnicity and Disease, 15(1), 130–137.
Acknowledgments
Research supported by a grant from the Department of Defense Breast Cancer Research Program (W81XWH-04-1-0548).
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Ashing, K., Rosales, M. & Fernandez, A. Exploring the influence of demographic and medical characteristics of African-American and Latinas on enrollment in a behavioral intervention study for breast cancer survivors. Qual Life Res 24, 445–454 (2015). https://doi.org/10.1007/s11136-014-0758-9
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DOI: https://doi.org/10.1007/s11136-014-0758-9