Abstract
OBJECTIVE: To systematically review U.S. studies examining the prevalence of limited health literacy and to synthesize these findings by evaluating demographic associations in pooled analyses.
DESIGN: We searched the literature for the period 1963 through January 2004 and identified 2,132 references related to a set of specified search terms. Of the 134 articles and published abstracts retrieved, 85 met inclusion criteria, which were 1) conducted in the United States with ≥25 adults, 2) addressed a hypothesis related to health care, 3) identified a measurement instrument, and 4) presented primary data. The authors extracted data to compare studies by population, methods, and results.
MAIN RESULTS: The 85 studies reviewed include data on 31,129 subjects, and report a prevalence of low health literacy between 0% and 68%. Pooled analyses of these data reveal that the weighted prevalence of low health literacy was 26% (95% confidence interval [CI], 22% to 29%) and of marginal health literacy was 20% (95% CI, 16% to 23%). Most studies used either the Rapid Estimate of Adult Literacy in Medicine (REALM) or versions of the Test of Functional Health Literacy in Adults (TOFHLA). The prevalence of low health literacy was not associated with gender (P=.38) or measurement instrument (P=.23) but was associated with level of education (P=.02), ethnicity (P=.0003), and age (P=.004).
CONCLUSIONS: A pooled analysis of published reports on health literacy cannot provide a nationally representative prevalence estimate. This systematic review exhibits that limited health literacy, as depicted in the medical literature, is prevalent and is consistently associated with education, ethnicity, and age. It is essential to simplify health services and improve health education. Such changes have the potential to improve the health of Americans and address the health disparities that exist today.
Similar content being viewed by others
References
Adams K, Corrigan JM, eds. Institute of Medicine. Priority Areas for National Action: Transforming Health Care Quality. Committee on Identifying Priority Areas for Quality Improvement. Washington, DC: National Academies Press; 2003.
Carmona RH. Health literacy in America: the role of health care professionals. Prepared remarks given at the American Medical Association House of Delegates Meeting, Chicago, IL, June 14, 2003. Available at: http://www.surgeongeneral.gov/news/speeches/ama061403.htm. Accessed February 19, 2004.
Ratzan SC, Parker RM. Introduction. In: Selden CR, Zorn M, Ratzan SC, Parker RM, eds. National Library of Medicine Current Bibliographies in Medicine: Health Literacy. Vol. NLM, Pub. no. CBM 2000-1. 2000. Bethesda, MD: National Institutes of Health, U.S. Department of Health and Human Services. Available at: http://www.nlm.nih.gov/pubs/cbm/hliteracy.html. Accessed January 15, 2004.
Nielsen-Bohlman LT, Panzer AM, Hamlin B, Kindig DA, eds. Institute of Medicine. Health literacy: a prescription to end confusion. Committee on Health Literacy, Board on Neuroscience and Behavioral Health. Washington, DC: National Academies Press. April 2004. Available at: http://www.nap.edu/catalog/10883.html/. Accessed April 19, 2004.
Weiss BD, Blanchard JS, McGee DL, et al. Illiteracy among Medicaid recipients and its relationship to health care costs. J Health Care Poor Underserved. 1994;5:99–111.
Rudd RE, Moeykens BA, Colton TC. Health and Literacy: A review of medical and public health literature. In: Comings J, Graners B, Smith C, eds. Health and Literacy. New York, NY: Jossey-Bass; 1999.
Kirsch I, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Findings of the National Adult Literacy Survey. Washington, DC: National Center for Education Statistics, U.S. Department of Education; 1993.
Sum A, Kirsch IS, Taggart R. The Twin Challenges of Mediocrity and Inequality: Literacy in the U.S. from an International Perspective. Policy Information Report. Princeton, NJ: Education Testing Service; 2002.
NSCALL. National Center for the Study of Adult Learning and Literacy: Health Literacy Literature. Available at: http://www.hsph.harvard.edu/healthliteracy/literature.html. Accessed December 1, 2003.
Ahluwalia JS, Richter K, Mayo MS, et al. African American smokers interested and eligible for a smoking cessation clinical trial: predictors of not returning for randomization. Ann Epidemiol. 2002;12:206–12.
Al-Tayyib AA, Rogers SM, Gribble JN, Villarroel M, Turner CF. Effect of low medical literacy on health survey measurements. Am J Public Health. 2002;92:1478–81.
Arnold CL, Davis TC, Berkel HJ, Jackson RH, Nandy I, London S. Smoking status, reading level, and knowledge of tobacco effects among low-income pregnant women. Prev Med. 2001;32:313–20.
Arozullah AM, Lee S, Khan T, Kurup S. Low health literacy increases the risk of preventable hospital admission. J Gen Intern Med. 2003;18(suppl 1):221.
Bass PF III, Wilson JF, Griffith CH, Barnett DR. Residents’ ability to identify patients with poor literacy skills. Acad Med. 2002;77:1039–41.
Bass PF, Moore MA, Rising W, Ritchie CS. Differences in knowledge, self-efficacy, empowerment, and literacy among diabetic patients. J Gen Intern Med. 2003;18(suppl 1):168.
Beers BB, McDonald VJ, Quistberg DA, Ravenell KL, Asch DA, Shea JA. Disparities in health literacy between African American and non-African American primary care patients. J Gen Intern Med. 2003;18(suppl 1):169.
Bennett CL, Ferreira MR, Davis TC, et al. Relation between literacy, race, and stage of presentation among low-income patients with prostate cancer. J Clin Oncol. 1998;16:3101–4.
Bennett IM, Robbins S, Al Shamali N, Haecker T. Screening for low literacy among adult caregivers of pediatric patients. Fam Med. 2003;35:585–90.
Bryant B, Malone R, Ayscue D, DeWalt DA, Pignone MP. The effect of literacy and anticoagulation knowledge on the adequacy of warfarin anticoagulation for patients with atrial fibrillation. J Gen Intern Med. 2003;18(suppl 1):169.
Christensen RC, Grace GD. The prevalence of low literacy in an indigent psychiatric population. Psychiatr Serv. 1999;50:262–3.
Conlin KK, Schumann L. Literacy in the health care system: a study on open heart surgery patients. J Am Acad Nurse Pract. 2002;14:38–42.
Coyne CA, Xu R, Raich P, et al. Randomized, controlled trial of an easy-to-read informed consent statement for clinical trial participation: a study of the Eastern Cooperative Oncology Group. J Clin Oncol. 2003;21:836–42.
Davis TC, Crouch MA, Long SW, et al. Rapid assessment of literacy levels of adult primary care patients. Fam Med. 1991;23:433–5.
Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993;25:391–5.
Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 1994;93:460–8.
Davis TC, Arnold C, Berkel HJ, Nandy I, Jackson RH, Glass J. Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer. 1996;78:1912–20.
Davis TC, Fredrickson DD, Arnold C, Murphy PW, Herbst M, Bocchini JA. A polio immunization pamphlet with increased appeal and simplified language does not improve comprehension to an acceptable level. Patient Educ Couns. 1998;33:25–37.
Davis TC, Holcombe RF, Berkel HJ, Pramanik S, Divers SG. Informed consent for clinical trials: a comparative study of standard versus simplified forms. J Natl Cancer Inst. 1998;90:668–74.
Duffy MM, Snyder K. Can ED patients read your patient education materials? J Emerg Nurs. 1999;25:264–7.
Foltz A, Sullivan J. Reading level, learning presentation preference, and desire for information among cancer patients. J Cancer Educ. 1996;11:32–8.
Fortenberry JD, McFarlane MM, Hennessy M, et al. Relation of health literacy to gonorrhoea related care. Sex Transm Infect. 2001;77:206–11.
Galloway G, Murphy P, Chesson AL, Martinez K. MDA and AAEM informational brochures: can patients read them? J Neurosci Nurs. 2003;35:171–4.
Gannon W, Hildebrandt E. A winning combination: women, literacy, and participation in health care. Health Care Women Int. 2002;23:754–60.
Hayes KS. Randomized trial of geragogy-based medication instruction in the emergency department. Nurs Res. 1998;47:211–8.
Hayes KS. Literacy for health information of adult patients and caregivers in a rural emergency department. Clin Excell Nurse Pract. 2000;4:35–40.
Hearth-Holmes M, Murphy PW, Davis TC, et al. Literacy in patients with a chronic disease: systemic lupus erythematosus and the reading level of patient education materials. J Rheumatol. 1997;24:2335–9.
Kaufman H, Skipper B, Small L, Terry T, McGrew M. Effect of literacy on breast-feeding outcomes. South Med J. 2001;94:293–6.
Kim SP, Knight SJ, Tomori C, et al. Health literacy and shared decision making for prostate cancer patients with low socioeconomic status. Cancer Invest. 2001;19:684–91.
Li BD, Brown WA, Ampil FL, Burton GV, Yu H, McDonald JC. Patient compliance is critical for equivalent clinical outcomes for breast cancer treated by breast-conservation therapy. Ann Surg. 2000;231:883–9.
Lindau ST, Tomori C, Lyons T, Langseth L, Bennett CL, Garcia P. The association of health literacy with cervical cancer prevention knowledge and health behaviors in a multiethnic cohort of women. Am J Obstet Gynecol. 2002;186:938–43.
Mayeaux EJ Jr, Davis TC, Jackson RH, et al. Literacy and self-reported educational levels in relation to Mini-mental State Examination scores. Fam Med. 1995;27:658–62.
McNeill EL, Estrada CA, Pinn T, Baro AL, Collins C, Byrd JC. Impact of health literacy on patients with human immunodeficiency virus infection. J Gen Intern Med. 2003;18(suppl 1):182.
Moon RY, Cheng TL, Patel KM, Baumhaft K, Scheidt PC. Parental literacy level and understanding of medical information. Pediatrics. 1998;102:e25.
Murphy PW, Chesson AL, Berman SA, Arnold CL, Galloway G. Neurology patient education materials: do our educational aids fit our patients’ needs? J Neurosci Nurs. 2001;33:99–104.
Raymond EG, Dalebout SM, Camp SI. Comprehensive of a prototype over-the-counter label for an emergency contraceptive pill product. Obstet Gynecol. 2002;100:342–9.
Rothman RL, Pignone MP, Malone R, Bryant B, DeWalt DA, Crigler B. A longitudinal analysis of the relationship between literacy and metabolic control in patients with diabetes. J Gen Intern Med. 2003;18(suppl 1):155.
Sharp LK, Zurawski JM, Roland PY, O’Toole C, Hines J. Health literacy, cervical cancer risk factors, and distress in low-income African-American women seeking colposcopy. Ethn Dis. 2002;12:541–6.
Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 1998;114:1008–15.
Wilson FL, McLemore R. Patient literacy levels: a consideration when designing patient education programs. Rehabil Nurs. 1997;22:311–7.
Nilson FL, Racine E, Tekieli V, Williams B. Literacy, readability and cultural barriers: critical factors to consider when educating older African Americans about anticoagulation therapy. J Clin Nurs. 2003;12:275–82.
Artinian NT, Lange MP, Templin TN, Stallwood LG, Hermann CE. Functional health literacy in an urban primary care clinic. Internet J Adv Nurs Pract. 2001;5:11.
Benson JG, Forman WB. Comprehension of written health care information in an affluent geriatric retirement community: use of the test of functional health literacy. Gerontology. 2002;48:93–7.
Gazmararian JA, Baker DW, Williams MV, et al. Health literacy among Medicare enrollees in a managed care organization. JAMA. 1999;281:545–51.
Gazmararian JA, Parker RM, Baker DW. Reading skills and family planning knowledge and practices in a low-income managed-care population. Obstet Gynecol. 1999;93:239–44.
Golin CE, Liu H, Hays RD, et al. A prospective study of predictors of adherence to combination antiretroviral medication. J Gen Intern Med. 2002;17:756–65.
Kalichman SC, Ramachandran B, Catz S. Adherence to combination antiretroviral therapies in HIV patients of low health literacy. J Gen Intern Med. 1999;14:267–73.
Kalichman SC, Rompa D. Functional health literacy is associated with health status and health-related knowledge in people living with HIV-AIDS. J Acquir Immune Defic Syndr. 2000;25:337–44.
Kalichman SC, Benotsch E, Suarez T, Catz S, Miller J, Rompa D. Health literacy and health-related knowledge among persons living with HIV/AIDS. Am J Prev Med. 2000;18:325–31.
Lasater L, Davidson A, Mehler P. Patient literacy, adherence, and anticoagulation therapy outcomes: a preliminary report. J Gen Intern Med. 2003;18:179.
Montalto NJ, Spiegler GE. Functional health literacy in adults in a rural community health center. W V Med J. 2001;97:111–4.
Nurss JR, El-Kebbi IM, Gallina DL, et al. Diabetes in urban African Americans: functional health literacy of municipal hospital outpatients with diabetes. Diabetes Educ. 1997;23:563–8.
Paasche-Orlow M, Brancati F, Rand C, Krishnan J. Education of patients with asthma and low literacy. J Gen Intern Med. 2003;18(Suppl 1):227.
Schillinger D, Grumbach K, Piette J, et al. Association of health literacy with diabetes outcomes. JAMA. 2002;288:475–82.
Shea JA, Guerra C, Weiner J, Aguirre A, Schaffer M, Asch DA. Health literacy and patient satisfaction. J Gen Intern Med. 2003;18(suppl 1):187.
Williams MV, Parker RM, Baker DW, et al. Inadquate functional health literacy among patients at two public hospitals. JAMA. 1995;274:1677–82.
Williams MV, Baker DW, Parker RM, Nurrs JR. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hypertension and diabetes. Arch Intern Med. 1998;158:166–72.
Win K, Machtinger E, Wang F, Chan LL, Rodriguez ME, Schillinger D. Understanding of warfarin therapy and stroke among ethically diverse anticoagulation patients at a public hospital. J Gen Intern Med. 2003;18(suppl 1):278.
Coles GS, Roth L, Pollack IW. Literacy skills of long-term hospitalized mental patients. Hosp Community Psychiatry. 1978;29:512–6.
Cooley ME, Moriarty H, Berger MS, Selm-Orr D, Coyle B, Short T. Patient literacy and the readability of written cancer educational materials. Oncol Nurs Forum. 1995;22:1345–51.
Currier GW, Sitzman R, Trenton A. Literacy in the psychiatric emergency room. J Nerv Ment Dis. 2001;189:56–8.
Davis TC, Jackson RH, George RB, et al. Reading ability in patients in substance misuse treatment centers. Int J Addict. 1993;28:571–82.
Fredrickson DD, Washington RL, Pham N, Jackson T, Wiltshire J, Jecha LD. Reading grade levels and health behaviors of parents at child clinics. Kans Med. 1995;96:127–9.
Hanson-Divers EC. Developing a medical achievement reading test to evaluate patient literacy skills: a preliminary study. J Health Care Poor Underserved. 1997;8:56–69.
Hartman TJ, McCarthy PR, Park RJ, Schuster E, Kushi LH. Results of a community-based low-literacy nutrition education program. J Community Health. 1997;22:325–41.
Jackson RH, Davis TC, Bairnsfather LE, George RB, Crouch MA, Gault H. Patient reading ability: an overlooked problem in health care. South Med J. 1991;84:1172–5.
Jackson RH, Davis TC, Murphy P, Bairnsfather LE, George RB. Reading deficiencies in older patients. Am J Med Sci. 1994;308:79–82.
Johnson ME, Fisher DG. Evaluating three reading tests for use with alcohol and other drug-abusing populations. Alcohol Clin Exp Res. 1996;20:1125–9.
Johnson ME, Fisher DG, Davis DC, et al. Assessing reading level of drug users for HIV and AIDS prevention purposes. AIDS Educ Prev. 1996;8:323–34.
Jubelirer SJ, Linton JC, Magnetti SM. Reading versus comprehension: implications for patient education and consent in an outpatient oncology clinic. J Cancer Educ. 1994;6:26–9.
Kicklighter JR, Stein MA. Factors influencing diabetic clients’ ability to read and comprehend printed diabetic diet material. Diabetes Educ. 1993;19:40–6.
Klinge V, Dorsey J. Correlates of the Woodcock-Johnson Reading Comprehension and Kaufman Brief Intelligence Test in a forensic psychiatric population. J Clin Psychol. 1993;49:593–8.
Larson I, Schumacher HR. Comparison of literacy level of patients in a VA arthritis center with the reading level required by educational materials. Arthritis Care Res. 1992;5:13–6.
Letz R, DiIorio CK, Shafer PO, Yeager KA, Henry TR, Schomer DL. A computer-based reading test for use as an index of premorbid general intellectual level in North American English-speaking adults. Neurotoxicology. 2003;24:503–12.
Manly JJ, Touradji P, Tang MX, Stern Y. Literacy and memory decline among ethnically diverse elders. J Clin Exp Neuropsychol. 2003;25:680–90.
Meade CD, Byrd JC. Patient literacy and the readability of smoking education literature. Am J Public Health. 1989;79:204–6.
Meade CD, Byrd JC, Lee M. Improving patient comprehension of literature on smoking. Am J Public Health. 1989;79:1411–2.
Meade CD, McKinney WP, Barnas GP. Educating patients with limited literacy skills: the effectiveness of printed and videotaped materials about colon cancer. Am J Public Health. 1994;84:119–21.
Miller CK, O’Donnell DC, Searight HR, Barbarash RA. The Deaconess Informed Consent Comprehension Test: an assessment tool for clinical research subjects. Pharmacotherapy. 1996;16:872–8.
Spandorfer JM, Karras DJ, Hughes LA, Caputo C. Comprehension of discharge instructions by patients in an urban emergency department. Ann Emerg Med. 1995;25:71–4.
TenHave TR, Van Horn B, Kumanyika S, Askov E, Matthews Y, Adams-Campbell LL. Literacy assessment in a cardiovascular nutrition education setting. Patient Educ Couns. 1997;31:139–50.
Weiss BD, Hart G, McGee DL, D’Estelle S. Health status of illiterate adults: relation between literacy and health status among persons with low literacy skills. J Am Board Fam Pract. 1992;53:257–64.
Wydra EW. The effectiveness of a self-care management interactive multimedia module. Oncol Nurs Forum. 2001;28:1399–407.
Zaslow MJ, Hair EC, Dion MR, Ahluwalia SK, Sargent J. Maternal depressive symptoms and low literacy as potential barriers to employment in a sample of families receiving welfare: are there two-generational implications? Women Health. 2001;32:211–51.
Spreen O, Strauss E. A Compendium of Neuropsychological Tests: Administration, Norms, and Commentary, 2nd ed. New York, NY: Oxford University Press; 1998.
Markwardt FC Jr. Peabody Individual Achievement Test-Revised. Pines, MN: American Guidance Service. Available at: http://www.agsnet.com/Group.asp?nMarketInfoiD=31&nCategoryInfoID=2503&nGroupInfoID=a29060. Accessed February 24, 2004.
Doak C, Doak L, Root J. Teaching Patients with Low Literacy Skills, 2nd ed. Philadelphia, PA: J. B. Lippincott Company; 1996.
Slosson RL. Slosson Oral Reading Test. East Aurora, NY: Slosson Educational Publications, Inc. Available at: http://www.slosson.com/productCat6886.ctlg. Accessed February 24, 2004.
Sabatini JP. McGraw Hill Contemporary: Tests of Adult Basic Education (TABE). Available at: http://www.ctb.com/products/product_summary.jsp?FOLDER%3C%3Efolder_id=1408474395217279&bmUID=1104292646342. Accessed February 10, 2004.
Nurss JR, Parker RM, Williams MV, Baker DW. Test of Functional Literacy in Adults, 2nd ed.. Snow Camp, NC: Peppercorn Books & Press; 2001.
Nurss JR, Parker RM, Williams MV, Baker DW. Test of Functional Literacy in Adults. Greensboro, NC: Peppercorn Books and Press, Inc. Available at: http://www.peppercornbooks.com/catalog/advanced_search_result.php?osCsid=e9102eea98709128d04e2ad9b77able7 & search_id=1&search_in_description=1&inc_subact=1&keywords=TOFHLA&osCsid=e9102eea98709128d04e2ad9b77able7. Accessed February 24, 2004.
Wilkinson GS. Harcourt: Wide Range Achievement Test 3 (WRAT3). Available at: http://harcourtassessment.com/haiweb/Cultures/enUS/Products/Product+Detail.htmCS_ProductID=015-8987-90X& CS_Category=AchievementBasicSkills&CS_Catalog=TPC-USCatalog. Accessed February 10, 2004.
Woodcock RW. Woodcock Reading Mastery Tests. Circle Pines, MN: American Guidance Service, Inc. Available at: http://www.agsnet.com/Group.asp?nGroupInfoID=a16640. Accessed February 24, 2004.
Parker RM, Ratzan SC, Lurie N. Health literacy: a policy challenge for advancing high-quality health care. Health Aff (Millwood). 2003;22:147–53.
Weiss BD, Coyne C. Communicating with patients who cannot read. N Engl J Med. 1997;337:272–4.
Finan N. Visual literacy in images used for medical education and health promotion. J Audiov Media Med. 2002;25:16–23.
Shin HB, Bruno R. Language Use and English-speaking Ability: 2000. Issued October 2003. Available at: http://www.census.gov/prod/2003pubs/c2kbr-29.pdf. Accessed January 22, 2004.
Lee SY, Arozullah AM, Cho YI. Health literacy, social support, and health: a research agenda. Soc Sci Med. 2004;58:1309–21.
Nurss JR, Baker DW, Davis TC, Parker RM, Williams MV. Difficulties in functional health literacy screening in Spanish-speaking adults. J Reading. 1995;38:632–7.
Friedman SM, Munoz B, Rubin GS, West SK, Bandeen-Roche K, Fried LP. Characteristics of discrepancies between self-reported visual function and measured reading speed Salisbury Eye Evaluation Project Team. Invest Ophthalmol Vis Sci. 1990;40:858–64.
Meyer J, Xu G, Thornby J, Chowdhury M, Quach M. Longitudinal analysis of abnormal domains comprising mild cognitive impairment (MCI) during aging. J Neurol Sci. 2002;201:19–25.
Baker DW, Parker RM, Williams MV, et al. The health care experience of patients with low literacy. Arch Fam Med. 1996;5:329–34.
Parikh NS, Parker RM, Nurss JR, Baker DW, Williams MV. Shame and health literacy: the unspoken connection. Patient Educ Couns. 1996;27:33–9.
National Assessments of Adult Literacy: National Center of Education Statistics, Institute for Education Sciences, U.S. Department of Education. Available at: http://nces.ed.gov/naal/. Accessed February 19, 2004.
De Walt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP. Literacy and health outcomes: a systematic review of the Literature. J Gen Intern Med. 2004;19:1228–39.
Author information
Authors and Affiliations
Corresponding author
Additional information
The authors have no conflicts of interest to report.
The conclusions and opinions in this article are not necessarily those of the Institute of Medicine or its Committee on Health Literacy.
Rights and permissions
About this article
Cite this article
Paasche-Orlow, M.K., Parker, R.M., Gazmararian, J.A. et al. The prevalence of limited health literacy. J GEN INTERN MED 20, 175–184 (2005). https://doi.org/10.1111/j.1525-1497.2005.40245.x
Accepted:
Issue Date:
DOI: https://doi.org/10.1111/j.1525-1497.2005.40245.x