The Case for Development of a New Test of Health Literacy

Patricia Agre

Ezra Stieglitz

Glen Milstein

ONF 2006, 33(2), 283-289. DOI: 10.1188/06.ONF.283-289

Purpose/Objectives: To review the need for reading assessments for patients with cancer, review existing reading assessment tools, and make a case for a new tool specific to patients with cancer.

Data Sources: Published articles, experiences, and discussions with published authors in the field of literacy.

Data Synthesis: Valid and reliable tools that assess word recognition and comprehension exist for general use in health care. Word-recognition tests do not always predict comprehension, and a commonly used comprehension test has sections assessing only very low, second year of high school, and graduate-level skills.

Conclusions: A new tool, developed specifically for patients with cancer, may better capture reading ability and comprehension. It is being evaluated for use in a clinical setting.

Implications for Nursing: If nurses know their patients' reading levels, they can plan more effectively for teaching self-care and discussing decision making. Outcomes related to health and satisfaction may improve if poor readers are given materials they can understand.

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    American Medical Association. (1999). Health literacy: Report of the Council on Scientific Affairs. JAMA, 281, 552-557.

    Barry, E. (1993). The Informal Reading Inventory: Highlighting connections and capabilities. Retrieved May 10, 2005, from

    Bennett, C.L., Ferreira, M.R., Davis, T.C., Kaplan, J., Weinberger, M., Kuzel, T., et al. (1998). Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. Journal of Clinical Oncology, 16, 3101-3104.

    Berkman, N.D., DeWalt, D.A., Pignone, M.P., Sheridan, S.L., Lohr, K.N., Lux, L., et al. (2004). Literacy and health outcomes. Summary, evidence report/technology assessment [No. 87]. Rockville, MD: Agency for Healthcare Research and Quality.

    Boswell, C., Cannon, S., Aung, K., & Eldridge, J. (2004). An application of health literacy research. Applied Nursing Research, 17, 61-64.

    Brez, S.M., & Taylor, M. (1997). Assessing literacy for patient teaching: Perspectives of adults with low literacy skills. Journal of Advanced Nursing, 25, 1040-1047.

    Cooley, M.E., Moriarty, H., Berger, M.S., Selm-Orr, D., Coyle, B., & Short, T. (1995). Patient literacy and the readability of written cancer educational materials. Oncology Nursing Forum, 22, 1345-1351.

    Davis, T.C., Arnold, C., Berkel, H.J., Nandy, I., Jackson, R.H., & Glass, J. (1996). Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer, 78, 1912-1920.

    Davis, T.C., Dolan, N.C., Ferreira, M.R., Tomori, C., Green, K.W., Sipler, A.M., et al. (2001). The role of inadequate health literacy skills in colorectal cancer screening. Cancer Investigation, 19, 193-200.

    Davis, T.C., Kennen, E.M., Gazmararian, J.A., & Williams, M.V. (2005). Literacy testing in health care research. In J.G. Schwartzberg, J.B. Van-Geest, & C.C. Wang (Eds.), Understanding health literacy (pp. 157-179). Chicago: American Medical Association Press.

    Davis, T.C., Long, S.W., Jackson, R.H., Mayeaux, E.J., George, R.B., Murphy, P.W., et al. (1993). Rapid estimate of adult literacy in medicine: A shortened screening instrument. Family Medicine, 25, 391-395.

    Davis, T.C., Williams, M.V., Marin, E., Parker, R.M., & Glass, J. (2002). Health literacy and cancer communication. CA: A Cancer Journal for Clinicians, 52, 134-149.

    Dolan, N.C., Ferreira, M.R., Davis, T.C., Fitzgibbon, M.L., Rademaker, A., Liu, D., et al. (2004). Colorectal cancer screening knowledge, attitudes, and beliefs among veterans: Does literacy make a difference? Journal of Clinical Oncology, 22, 2617-2622.

    Foltz, A., & Sullivan, J. (1998). Get real: Clinical testing of patients' reading abilities. Cancer Nursing, 21, 162-166.

    Fry, E. (1977). Fry's readability graph: Clarifi cations, validity, and extension to level 17. Journal of Reading, 21, 242-252.

    Gazmararian, J.A., Baker, D.W., Williams, M.V., Parker, R.M., Scott, T.L., Green, D.C., et al. (1999). Health literacy among Medicare enrollees in a managed care organization. JAMA, 281, 545-551.

    Gazmararian, J.A., Williams, M.V., Peel, J., & Baker, D.W. (2003). Health literacy and knowledge of chronic disease. Patient Education and Counseling, 51, 267-275.

    Gunning, T.G. (2002). Assessing and correcting reading and writing difficulties (2nd ed.). Boston: Allyn and Bacon.

    Kirsch, I.S., Jungeblut, A., Jenkins, L., & Kolstad, A. (1993). Adult literacy in America: A first look at the results of the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics.

    Lindau, S.T., Tomori, C., McCarville, M.A., & Bennett, C.L. (2001). Improving rates of cervical cancer screening and Pap smear follow-up for low-income women with limited health literacy. Cancer Investigation, 19, 316-323.

    Marwick, C. (1997). Patients' lack of literacy may contribute to billions of dollars in higher hospital costs. JAMA, 278, 971-972.

    Mayer, G.G., & Villaire, M. (2004). Low health literacy and its effects on patient care. Journal of Nursing Administration, 34, 440-442.

    Nielsen-Bohlman, L., Panzer, A., & Kindig, D.A. (Eds.). (2004). Health literacy: A prescription to end confusion. New York: The National Academies Press.

    Nurss, J.R., Parker, R.M., Williams, M.V., & Baker, D.W. (1995). TOFHLA: The Test of Functional Health Literacy in Adults. Snow Camp, NC: Peppercorn Brooks and Press.

    Parikh, N.S., Parker, R.M., Nurss, J.R., Baker, D.W., & Williams, M.V. (1996). Shame and health literacy: The unspoken connection. Patient Education and Counseling, 27, 33-39.

    Parker, R.M. (2000). Health literacy: A challenge for American patients and their health care providers. Health Promotion International, 15(4), 277-283.

    Parker, R.M., Baker, D.W., Williams, M.V., & Nurss, J.R. (1995). The Test of Functional Health Literacy in Adults: A new instrument for measuring patients' literacy skills. Journal of General Internal Medicine, 10, 537-541.

    Parker, R.M., Williams, M.V., Weiss, B.D., Baker, D.W., Davis, T., Doak, C., et al. (1999). Health literacy: Report of the Council of Scientific Affairs. JAMA, 281, 552-557.

    Roter, D.L. (2005). Health literacy and the patient-provider relationship. In J.G. Schwartzberg, J.B. VanGeest, & C.C. Wang (Eds.), Understanding health literacy (pp. 87-100). Chicago: American Medical Association Press.

    Rudd, R.E., Renzulli, D., Pereira, A., & Daltroy, L. (2005). Literacy demands in health care settings: The patient perspective. In J.G. Schwartzberg, J.B. VanGeest, & C.C. Wang (Eds.), Understanding health literacy (pp. 69-84). Chicago: American Medical Association Press.

    Schillinger, D., Bindman, A., Wang, F., Stewart, A., & Piette, J. (2004). Functional health literacy and the quality of physician-patient communication among diabetes patients. Patient Education and Counseling, 52, 315-323.

    Stieglitz, E.L. (2002). The Stieglitz Informal Reading Inventory: Assessing reading behaviors from emergent to advanced levels (3rd ed.). Boston: Allyn and Bacon.

    Touchstone Applied Science Associates. (2002). The Degrees of Reading Power program: DRP in brief. Brewster, NY: Author.

    U.S. Department of Health and Human Services. (2000). Healthy people 2010: Terminology. Retrieved January 31, 2006, from

    Williams, M.V., Baker, D.W., Parker, R.M., & Nurss, J.R. (1998). Relationship of functional health literacy to patients' knowledge of their chronic disease. A study of patients with hypertension and diabetes. Archives of Internal Medicine, 158, 166-172.

    Wilson, F.L. (1995). Measuring patients' ability to read and comprehend: A first step in patient education. Nursing Connections, 8(4), 17-25.

    Wilson, F.L. (2000). Are patient information materials too difficult to read? Home Healthcare Nurse, 18, 107-115.

    Wilson, F.L., Baker, L.M., Brown-Syed, C., & Gollop, C. (2000). An analysis of the readability and cultural sensitivity of information on the National Cancer Institute's Web site: CancerNet. Oncology Nursing Forum, 27, 1403-1409.

    Wilson, F.L., & Williams, B.N. (2003). Assessing the readability of skin care and pressure ulcer patient education materials. Journal of Wound, Ostomy, and Continence Nursing, 30, 224-230.