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
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.
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.
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
Eligible patients, most of whom were indigent and minority
individuals, were administered the Test of Functional Health Literacy
in Adults (TOFHLA), 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
In another of Dr. Bakers 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.
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.
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
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. Dr. Bakers team found that patients
at the lowest level of literacy were more likely to report poor
health even after adjusting for potentially confounding
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.
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
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
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
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.
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.
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
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
3. Williams MV, Parker RM, Baker DW, et al: Inadequate functional
health literacy among patients at two public hospitals. JAMA
4. Gazmararian JA, Baker DW, Williams MV, et al: Health literacy
among Medicare enrollees in a managed care organization. JAMA
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
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
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
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
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.