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Identifying Health Literacy and Health System Navigation Needs among Rural Cancer Patients: Findings from the Rural Oncology Literacy Enhancement Study (ROLES)

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Abstract

Rural residence is associated with disparities in cancer-related outcomes. Guided by the Chronic Care Model (CCM), the Rural Oncology Literacy Enhancement Study (ROLES) assessed health literacy and patient navigation needs among rural cancer patients. A mixed methods (qualitative and quantitative) approach was used, including: in-depth interviews, health literacy assessments, and phone surveys with cancer patients (N = 53) from 5 oncology clinics in rural Wisconsin; focus groups and self-administered surveys with staff (N = 41) in these clinics. Within four dimensions of the CCM (community resources, self-management support, delivery system design, and decision support), this study uncovered multiple unmet navigation needs, health literacy limitations, and barriers to quality cancer care. System-level implementation of patient navigation and health literacy best practices could contribute to improved cancer care and patient outcomes among rural populations. Further research identifying effective interventions that reduce cancer disparities among rural cancer patients is necessary.

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Acknowledgments

We would like to thank Mrs. Aaliya Bibi, and Dr. Alyssa Levy for their assistance with different aspects of the ROLES study. We would also like to thank members of the ROLES Community Advisory Board for their continued guidance and support. The funding for this study was provided by the University of Wisconsin School of Medicine and Public Health, the Wisconsin Partnership Program, the UW Carbone Cancer Center (P30 CA14520), the Wisconsin Comprehensive Cancer Control Program, and the National Institutes of Health (T32HS000083). The authors have no conflicts of interest with the above organizations funding this research.

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Authors and Affiliations

  1. Carbone Cancer Center, University of Wisconsin, 610 Walnut St., Rm 307, Madison, WI, 53726, USA

    Ana P. Martinez-Donate, Julie Halverson, Norma-Jean Simon, Jeanne Schaaf Strickland, Amy Trentham-Dietz & Rebecca Linskens

  2. Department of Population Health Sciences, University of Wisconsin, 610 Walnut St., 7th floor, Madison, WI, USA

    Ana P. Martinez-Donate, Norma-Jean Simon, Amy Trentham-Dietz & Xinyi Wang

  3. Department of Family Medicine, University of Wisconsin, Alumni Hall, 1100 Delaphine Ct, Madison, WI, 53725, USA

    Paul D. Smith

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  1. Ana P. Martinez-Donate
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  2. Julie Halverson
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  5. Amy Trentham-Dietz
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Correspondence to Ana P. Martinez-Donate.

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Martinez-Donate, A.P., Halverson, J., Simon, NJ. et al. Identifying Health Literacy and Health System Navigation Needs among Rural Cancer Patients: Findings from the Rural Oncology Literacy Enhancement Study (ROLES). J Canc Educ 28, 573–581 (2013). https://doi.org/10.1007/s13187-013-0505-x

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  • DOI: https://doi.org/10.1007/s13187-013-0505-x

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