Skip to main content

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

Journal of Cancer Education volume 28, pages 573–581 (2013)Cite this article

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.

This is a preview of subscription content, access via your institution.

Access options

Buy single article

Instant access to the full article PDF.

USD 39.95

Price includes VAT (USA)
Tax calculation will be finalised during checkout.

References

  1. Nielsen-Bohlman L, AM Panzer, DA Kindig eds (2004) Health Literacy: A Prescription to End Confusion. Washington D.C.: Committee on Health Literacy, Institute of Medicine. Accessed September 9, 2011

  2. DeWalt DA, Callahan LF, Hawk VH et al (2013) Health Literacy Universal Precautions Toolkit. Available at: http://www.nchealthliteracy.org/toolkit/toolkit_w_appendix.pdf. Published April 2010. Accessed on March 28

  3. Berkman ND, Sheridan SL, Donahue KE, Halpern DJ, Crotty K (2011) Low health literacy and health outcomes: an updated systematic review. Ann Intern Med 155(2):97–107

    PubMed  Article  Google Scholar 

  4. Kutner M, Greenberg E, Jin Y, Paulsen C (2012) The Health Literacy of America’s Adults Results From the 2003 National Assessment of Adult Literacy (NCES 2006–483). Available at: http://nces.ed.gov/pubs2006/2006483.pdf. Accessed March 29

  5. White S, Chen J, Atchison R (2008) Relationship of preventive health practices and health literacy: a national study. Am J Health Behav 32(3):227–242

    PubMed  Article  Google Scholar 

  6. Davis TC, Williams MV, Marin E, Parker RM, Glass J (2002) Health literacy and cancer communication. CA Cancer J Clin 52(3):134–149

    PubMed  Article  Google Scholar 

  7. Koay K, Schofield P, Jefford M (2012) Importance of health literacy in oncology. J Clin Oncol 8:14–23

    Google Scholar 

  8. Hawley ST, Janz NK, Lillie SE, Friese CR, Griggs JJ, Graff JJ, Hamilton AS, Jain S, Katz SJ (2010) Perceptions of care coordination in a population-based sample of diverse breast cancer patients. Patient Educ Couns 815:534–540

    Google Scholar 

  9. Weaber KE, Geiger AM, Lu L, Douglas CL (2013) Rural–urban disparities in health status among US cancer survivors. Cancer 119(5):1050–1057

    Article  Google Scholar 

  10. Halverson J, Martinez-Donate A, Trentham-Dietz A et al (2013) Health literacy and urbanicity among cancer patients. J Rural Heal. doi:10.1111/jrh.12018

    Google Scholar 

  11. Trentham-Dietz A, Walsh M (2008) ACCESS: Assessment of Cancer Care and Satisfaction. Summary of results. University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, Madison, WI

    Google Scholar 

  12. Shugarman LR, Sorbero MES, Tian H, Jain AK, Ashwood JS (2008) An exploration of urban and rural differences in lung cancer survival among medicare beneficiaries. Am J Public Health 98(7):1280–1287

    PubMed  Article  Google Scholar 

  13. McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, Wagner EH (2011) Self-management: enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin 61:50–62

    PubMed  Article  Google Scholar 

  14. Bodenhemier T, Wagner EH, Grumback K (2002) Improving primary care for patients with chronic illness. JAMA 288:1775–1779

    Article  Google Scholar 

  15. Baker DW, Williams MV, Parker RM, Gazmarian JA, Nurss J (1999) Development of a brief test to measure functional health literacy. Patient Educ Couns 38(1):33–42

    PubMed  Article  CAS  Google Scholar 

  16. Agency for Healthcare Research and Quality (2012) CAHPS Item Set for Addressing Health Literacy. AHRQ Document No. 2311. Department of Health and Human Services, Rockville, MD: U.S

    Google Scholar 

  17. Improving Chronic Illness Care program (2013) MacColl Institute for Health Care Innovation. http://www.improvingchroniccare.org/index.php?p=Decision_Support&s=24. Accessed 16 May

  18. Lee SJ, Back AL, Block SD, Stewart SK (2002) Enhancing physician-patient communication. Hematology 1(1):464–483

    Article  Google Scholar 

  19. IOM. Crossing the Quality Chasm (2013) A New Health System for the 21st Century. Washington DC: National Academy Press, 2001. Accessed http://www.nap.edu/catalog.php?record_id=10027#toc on Feb. 28

  20. Hoyt DR, Conger RD, Gaffney Valde J, Weihs K (1997) Psychological distress and help-seeking in rural America. Am J Community Pscyhol 4:449–470

    Article  Google Scholar 

  21. Guadagnolo BA, Boylan A, Sargent M, Koop D, Brunette D, Kanekar S, Shortbull V, Molloy K, Petereit DG (2011) Patient navigation for American Indians undergoing cancer treatment. Cancer 117(12):2754–2761

    PubMed  Article  Google Scholar 

  22. Petereit DG, Molloy K, Reiner ML et al (2008) Establishing a patient navigator program to reduce cancer disparities in the American Indian communities of Western South Dakota: initial observations and results. Cancer Control 15(3):254–259

    PubMed  Google Scholar 

  23. Robinson-White S, Conroy B, Slavish KH, Rosenzweig M (2010) Patient navigation in breast cancer: a systematic review. Cancer Nurs 33(2):127–140

    PubMed  Article  Google Scholar 

  24. Pedersen A, Hack TF (2010) Pilots of oncology health care: a concept analysis of the patient navigator role. Oncol Nurs Forum 37(1):55–60

    PubMed  Article  Google Scholar 

  25. Rahm AK, Sukhanova A, Ellis J, Mouchawar J (2007) Increasing utilization of cancer genetic counseling services using a patient navigator model. J Genet Couns 16(2):171–177

    PubMed  Article  Google Scholar 

  26. Fiscella K, Whitley E, Hendren S, Raich P, Humiston S, Winters P, Pascal J-P, Valverde P, Thorland W, Epstein R (2012) Patient navigation for breast and colorectal cancer treatment: a randomized trial. Cancer Epidemiol Biomarkers Prev 21(10):1673–1681

    PubMed  Article  Google Scholar 

  27. Campbell C, Craig J, Eggert J, Bailey-Dorton C (2010) Implementing and measuring the impact of patient navigation at a comprehensive community cancer center. Oncol Nurs Forum 37(1):61–68

    PubMed  Article  Google Scholar 

  28. Dwamena F, Holmes-Rovner M, Gaulden CM, Jorgenson S, Sadigh G, Sikorskii A, Lewsin S, Smtih RC, Coffey J, Olomu A (2013) Interventions for providers to promote patient-centered approach in clinical consultations (Review). Cochrane Databse Syst Rev. 2012 Dec;12:CD00.267. Accessed at http://onlinelibrary.wiley.com.ezproxy.library.wisc.edu/doi/10.1002/14651858.CD003267.pub2/abstract on Feb. 28

  29. Stewart M (1995) Effective physician-patient communication and health outcomes: a review. Can Med Assoc J 152(9):1423–1433

    CAS  Google Scholar 

  30. Ferreira MR, Dolan NC, Fitzgibbon ML, Davis TC, Gorby N, Ladewski L, Liu D, Rademaker AW, Medio F, Schmitt BP, Bennett CL (2005) Healthcare provider-directed intervention to increase colorectal cancer screening among veterans: Results of a randomized controlled trial. J Clin Oncol 23(7):1548–1554

    PubMed  Article  Google Scholar 

Download references

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.

Author information

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

Authors
  1. Ana P. Martinez-Donate
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Julie Halverson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Norma-Jean Simon
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jeanne Schaaf Strickland
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Amy Trentham-Dietz
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Paul D. Smith
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Rebecca Linskens
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Xinyi Wang
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Ana P. Martinez-Donate.

Rights and permissions

Reprints and Permissions

About this article

Cite this article

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

Download citation

  • Published:

  • Issue Date:

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

Keywords

  • Chronic Care Model
  • Health Literacy
  • Quality cancer care
  • Rural
  • Patient navigation