Poor Reading Skills Present Barrier to Cancer Care and Health

November 1, 2000

Technological ad-vances in cancer prevention and therapy have dramatically reduced cancer mortality, yet literacy continues to be a formidable obstacle to the treatment and prevention of cancer. Patients with low literacy skills who are unable to read and comprehend medical information vital to their health cannot take advantage of these innovative early detection programs and treatments.

Technological ad-vances in cancer prevention and therapy have dramatically reduced cancer mortality, yet literacy continues to be a formidable obstacle to the treatment and prevention of cancer. Patients with low literacy skills who are unable to read and comprehend medical information vital to their health cannot take advantage of these innovative early detection programs and treatments.

This article explores the impact of low literacy on health care and highlights the work of David Baker, MD, of the Metro Health Medical Center and Case Western Reserve University, Cleveland, presented at the Second Annual Robert H. Lurie Comprehensive Cancer Care Health Policy Symposium, Chicago.

Low Literacy Prevalence

According to the most comprehensive testing to date, the 1993 National Adult Literacy Survey, approximately 44 million people, nearly a quarter of the US population, are unable to read and understand the most elementary written materials. Another quarter of the population was found to have marginal literacy skills.

Although the majority of individuals with low literacy skills are white and born in the United States, particular populations are disproportionately represented. Ethnic and elderly populations have a particularly high prevalence of low literacy.[1]

Dr. David Baker has played a significant role in exploring the literacy problem in the health care system. In a 1995 article in the Journal of the American Medical Association, Dr. Baker reported on a project to determine the ability of 2,659 acute care patients at Atlanta and Los Angeles hospitals to perform routine reading and arithmetic exercises essential for successfully navigating the health care system.

Eligible patients, most of whom were indigent and minority individuals, were administered the Test of Functional Health Literacy in Adults (TOFHLA),[2] an instrument, developed in part by Dr. Baker, to measure functional health literacy through questions on passages adapted from frequently used patient information materials (eg, prescription bottle labels).

Of the 2,659 patients, more than 40% did not understand directions to take a medicine on an empty stomach, and nearly 60% could not understand a standard informed consent document. Approximately 35% of native English speakers and more than 60% of native Spanish speakers had inadequate or marginal health literacy.

These numbers were dramatically higher in the elderly population, with more than 80% of English and Spanish speakers over the age of 60 having inadequate or marginal health literacy scores on the TOFHLA.[3]

In another of Dr. Baker’s studies looking at 3,260 Medicare enrollees, approximately 34% of English-speaking and 54% of Spanish-speaking respondents had inadequate or marginal health literacy. For Medicare enrollees aged 85 or older, the adjusted odds ratio for having inadequate or marginal health literacy was 8.62 (95% CI 5.55 to 13.38), compared with participants aged 65 to 69 years.[4]

These studies and others indicate that many populations at increased risk for developing cancer, such as poor, minority, and elderly populations, lack the capacity to perform many of the basic reading tasks in the health care environment.[5]

Low Literacy and Health

Inadequate health literacy is an important barrier to patients’ understanding of their diagnoses and treatments, and significantly correlates with inferior self-reported health and higher health care costs.

It is difficult to separate the effects of literacy from other variables associated with poor health: poverty, unemployment, low educational attainment, lack of health insurance, old age, and minority ethnicity. However, even after adjusting for these variables in multivariate analyses, four large-scale studies report that the relationship between literacy and poor health remains.

In a 1997 study, Dr. Baker and his colleagues measured self-reported health and health care utilization of patients at two hospitals in Atlanta and Los Angeles.[6] Dr. Baker’s team found that patients at the lowest level of literacy were more likely to report poor health even after adjusting for potentially confounding sociodemographic variables.

In a separate study of 958 patients presenting over a 2-year period at an urban public hospital in Atlanta, Dr. Baker and his colleagues found that patients with inadequate literacy were 1.7 times more likely to be hospitalized than were their peers with adequate literacy, after adjusting for other variables.[7]

Another study of 400 randomly selected Medicaid recipients revealed that at the lowest literacy level, the annual health care cost was nearly 4.4 times higher than that of the overall trial population ($12,974 vs $2,969). The restriction of the participants to Medicaid enrollees provided inherent control for socioeconomic status.[8,9]

The high cost of care for low literacy patients further supports that these patients may have poorer health status, may use more emergency services, or may be more likely to be hospitalized.

The earliest study measured the physical and psychological profiles of enrollees in adult basic education classes using the Sickness Impact Profile. Again, participants with lower literacy skills reported worse health than other participants. Those at the lowest literacy levels reported health comparable to that of people suffering from serious chronic illnesses. These relationships also persisted after statistical adjustment for sociodemographic confounders.[9,10]

Low Literacy Barriers to Effective Health Management

Low literacy can interfere with patients’ understanding of their disease and physician instructions for disease management. Specifically, low literacy is associated with poor adherence to medication regimens, lack of knowledge about chronic illnesses, and misuse of health equipment. Low literacy patients are also less likely to understand discharge instructions after an emergency visit.[11]

These findings may, in part, explain why those with low functional health literacy are more likely to be hospitalized even after adjusting for their demographic characteristics, socioeconomic status, and overall health.

In interview studies, patients with limited reading ability frequently reported medication errors because they were unable to read prescription labels.

In a study of patient adherence to HIV medication regimens, patients who did not complete high school and those who had low health literacy were less likely to report having taken all prescribed doses during the preceding 2 days. These patients had lower CD4 counts and a higher HIV viral load, increasing the possibility of HIV progression and infection of others. Patients with poor adherence to strict dosing regimens may also risk developing multidrug-resistant HIV.[12]

Inadequate functional health literacy also presents a barrier to patients’ understanding of their chronic disease. Dr. Baker measured the functional health literacy of 402 patients with hypertension and diabetes at two hospitals in Atlanta and Los Angeles. Participants were also asked basic questions on the most important aspects of their disease.

Disease knowledge varied significantly with literacy. Almost all patients with adequate literacy and hypertension were able to correctly identify a reading of 160/100 mm Hg as high blood pressure, compared with approximately half of the low literate patients with the same disease.

Similarly, 94% of diabetic patients with adequate literacy correctly identified the symptoms of hypoglycemia, compared with only half of diabetic patients with inadequate literacy.[13]

In another study of patients treated in an asthma clinic, low literacy was significantly associated with improper use of a metered-dose inhaler. Although two thirds of the 483 surveyed patients stated that they graduated from high school, only 27% were found to have high school literacy levels. Furthermore, self-reported educational levels did not correlate well to disease knowledge or proper use of a metered-dose inhaler.[14]

Low Literacy Barriers to Cancer Screening and Prevention

In a recent review of NIH programs for ethnic minorities and the medically underserved, the Institute of Medicine called attention to the effects of low literacy on cancer incidence and mortality.[5] Since low literacy is significantly correlated with low income and low education levels, patients with low literacy skills experience disproportionately high cancer incidence and mortality rates.

Researchers theorize that these disproportionate rates are heavily influenced by lifestyle risk factors such as tobacco and alcohol use, high-fat diet, occupational risks, and patterns of care related to early detection, diagnosis, and treatment.

Patients with low literacy may not have access to information on behavioral risk factors for cancer and may not know about or understand the significance of cancer screening and prevention prac-tices. In one study, for example, low literacy was significantly associated with low knowledge of mammography, and 40% of women at the lowest literacy level did not know why women were given mammograms.[15]

A recent study by Bennett et al showed that low literate male patients in Chicago and Shreveport were significantly more likely to present with advanced-stage prostate cancer even after adjusting for age, race, and city.[16]

Cancer education and behavior adjustment pose additional challenges in low literacy populations, particularly because most educational materials are written at the 10th grade level while the reading ability of the average American is estimated to be at the 8th grade level.

The Virginia Literacy Council has estimated that approximately 50% of the adult US population may not be able to read the National Cancer Institute’s (NCI) patient information materials.[17] Low literate patients often only distinguish segments of the passages without comprehending the information in context and can come to erroneous conclusions: “It says that if you have a mammogram, you may have to have your breast taken off.”[18]

Furthermore, consent forms for research projects, cancer trials, and invasive procedures are typically written at the college or graduate school level. The problem of poor comprehension may be exacerbated for high-risk populations, such as the poor and elderly, who tend to have lower literacy levels. The barriers presented by complex consent forms written at very high literacy levels may play a significant role in the low enrollment of minorities in cancer clinical trials.[17]

The Health Care Experience of Low Literate Persons

In addition to the comprehension barriers that low literate patients face, there are emotional barriers as well. Health care providers are often not sensitized to the needs of low literate patients, and therefore patients with low literacy skills are often left feeling ashamed and frustrated.

In one study by Dr. Baker, a large portion of patients who admitted to having difficulty reading also admitted to feeling ashamed of their difficulty. Two thirds of the low literate patients had never told their spouse of their problem, and approximately one fifth had never told anyone.[19]

Although low literate patients need extra assistance to ensure adequate comprehension of instructions, very few patients will readily admit to their difficulty or ask for extra assistance. Patients may try to mask their problem with excuses and stories, like forgetting their glasses. Their sense of shame may be reinforced by hospital staff who become frustrated or angry when someone cannot complete a form or read an instruction.

These patients may decide not to seek medical care due to the intimidating amount of reading required to interpret signs, labels, forms, etc. To cope, low literate patients rely heavily on oral and visual clues, and many bring a friend or family member to translate written materials.[20]

In Conclusion

As the technology of cancer prevention, screening, and treatment becomes continually more sophisticated and diverse, we ask patients to acquire an increasing body of knowledge about health.

Literacy has been repeatedly linked to under utilization of cancer screening programs and higher cancer mortality, demonstrating that the availability of services does not translate into utilization of services. ONI


1. Kirsch IS, Jungleblut A, Jenkins L, et al: Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Washington, DC, US Department of Health, Education, and Welfare, 1993.

2. Parker RM, Baker DW, Williams MV, et al: The Test of Functional Health Literacy in Adults: A new instrument for measuring patients’ literacy skills. Journal of General Internal Medicine 10:537-541, 1995.

3. Williams MV, Parker RM, Baker DW, et al: Inadequate functional health literacy among patients at two public hospitals. JAMA 274:1677-1682, 1995.

4. Gazmararian JA, Baker DW, Williams MV, et al: Health literacy among Medicare enrollees in a managed care organization. JAMA 281:545-551, 1999.

5. Haynes MA, Smedley BD (eds): The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC, National Academy Press, 1999.

6. Baker DW, Parker RM, Williams MV, et al: The relationship of patient reading ability to self-reported health and use of health services. Am J Public Health 87:1027-1030, 1997.

7. Baker DW, Parker RM, Williams MV, et al: Health literacy and the risk of hospital admission. Journal of General Internal Medicine 13:791-798, 1998.

8. Stedman LC, Kaestle CF: Literacy and reading performance in the United States from 1880 to present, in Kaestle CF (ed): Literacy in the United States: Readers and Readings Since 1880. New Haven, Yale University Press, 1991, pp 75-128.

9. The National Work Group on Literacy and Health: Communicating with patients who have limited literacy skills. J Fam Pract 46:168-175, 1998.

10. Weiss BD, Hart G, McGee DL, et al: Health status of illiterate adults: Relation between literacy and health status among persons with low literacy skills. Journal of the American Board of Family Practice 5:257-264, 1992.

11. Baker DW: Reading between the lines: Deciphering the connections between literacy and health. Journal of General Internal Medicine 14:315-317, 1999.

12. Kalichman SC, Ramachandran B, Catz S: Adherence to combination antiretroviral therapies in HIV patients of low health literacy. Journal of General Internal Medicine 14:267-273, 1999.

13. Williams MV, Baker DW, Parker RM, et al: Relationship of functional health literacy to patients’ knowledge of their chronic disease: A study of patients with hypertension and diabetes. Arch Intern Med 158:166-172, 1998.

14. Williams MV, Baker DW, Honig EG, et al: Inadequate literacy is a barrier to asthma knowledge and self-care. Chest 114:1008-1015, 1998.

15. Davis TC, Arnold C, Berkel HJ, et al: Knowledge and attitude on screening mammography among low-literate, low-income women. Cancer 78:1912-1920, 1996.

16. 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 16:3101-3104, 1998.

17. Brown P, Ames N, Mettger W, et al: Closing the comprehension gap: Low literacy and the cancer information service. J Natl Cancer Inst Monographs 14:157-163, 1993.

18. Doak CC, Doak LG, Friedell GH, et al: Improving comprehension for cancer patients with low literacy skills: Strategies for clinicians. CA-A Cancer Journal for Clinicians 48:151-163, 1998.

19. Parikh NS, Parker RM, Nurss JR, et al: Shame and health literacy: The unspoken connection. Patient Education and Counseling 27(1):33-39, 1996.

20. Baker DW, Parker RM, Williams MV, et al: The health care experience of patients with low literacy. Arch Fam Med 5:329-334, 1996.