CHICAGOLow literacy remains a formidable stumbling block
preventing many Americans from receiving optimal cancer treatment and
This article highlights the efforts of two researchers to bridge the
literacy gap that separates medically underserved, low literate
populations from effective cancer care. Gilbert Friedell, MD, and Douglas Bradham, DrPH, presented their work at the Second Annual
Robert H. Lurie Comprehensive Cancer Center Health Policy Symposium.
Several recent guidelines have been established to ensure that
patients comprehend the written information given to them. The Joint
Commission on Accreditation of Healthcare Organizations (JCAHO) has
mandated that hospitals establish a process to determine if patients
can readily understand their informed consent procedures, medication
and discharge instructions, and other communications.
There are several possible mechanisms to accomplish this goal:
screening all patients for literacy level, rewriting all materials at
the fifth grade level, and providing information through video and
The National Cancer Institute has established the Cancer Education
Program charged with communicating cancer prevention, early
detection, and treatment information to individuals with limited
As a result of increased efforts to reach low literacy populations,
the National Work Group on Literacy and Health (formerly known as the
National Work Group on Cancer and Literacy) was convened. Dr. Gilbert
Friedell was invited to participate and has served as a co-author of
the recommendations presented below.
Identification of persons with low literacy skills.
There are several currently available tests of literacy that can be
administered in a few minutes.
The Rapid Estimate of Adult Literacy in Medicine (REALM) and the
Short-Test of Functional Health Literacy in Adults (S-TOFHLA) are
widely used instruments to assess the reading ability of an
individual in the health care setting.
The S-TOFHLA is currently available in both Spanish and English.
More extensive reading and comprehension instruments available to the
researcher include the WRAT-R, MART, Cloze, PIAT, and IDL.
Instruments to assess the literacy level of written material include
the SMOG, Flesh-Kincaid, Dale Chall, Fry, and FOG.
Screening for literacy can be an important first step to reaching out
and tailoring communication to patients of low literacy, many of whom
will try to mask their poor reading ability. Screening can also be
helpful for researchers studying low literacy populations.
Self-Reports No Substitute
Dr. Douglas Bradham noted that many common instruments, such as
quality-of-life questionnaires, exceed the reading ability of their
target audience and unknowingly introduce bias into their data. He
further warned that self-reported educational attainment is an
extremely poor substitute for actual assessment of reading ability.
Thus, Dr. Bradham recommends that both research instruments and the
target audience be screened to ensure a match between level of
difficulty and reading ability.
In research and in clinical practice, literacy screening could
identify individuals who could be attended to by a nurse or
interviewer to ensure comprehension of the task.
Before implementing screening, however, staff should be made aware of
the shame patients feel regarding their own low literacy and trained
on sensitive methods of addressing the topic.
Use of pamphlets and videos in cancer education for low
literacy levels. Materials written at the fifth grade level have
proven to be effective and appropriate for low literate and advanced
readers alike. Materials created to target readers with low literacy
skills should use only common one- or two-syllable words, large
fonts, and plenty of space between lines to make the text look easy
to read. An explanation of any unfamiliar words should be provided.
The Cancer Information Service (CIS), an NCI initiative, has
developed and extensively tested fact sheets written at the fourth
grade level and found them to be effective in communicating facts to
low literate audiences. CIS has expanded to provide more
community-based coverage across the country and can be reached at
Use of Videos
Videos have also been found effective as an alternative to printed
material. Meade et al conducted a randomized trial on the relative
efficacy of a low literacy brochure and a video in colon cancer
screening education. Patients with low literacy skills who viewed the
video and those who read the brochure were found to achieve similar
Use of community outreach programs. In Appalachia and
eastern Kentucky, poverty and illiteracy are extremely concentrated,
and, consequently, the incidence and mortality from cervical
carcinoma are disproportionately high. Less than 45% of women from
eastern Kentucky will ever receive a high school diploma, and nearly
20% are Medicare recipients. These women represent the lowest
percentage of women receiving mam-mograms.
Through use of community health advisors, Dr. Friedell has worked to
increase cancer screening among Appalachian women. Women
from the community (volunteers or paid staff) were trained to educate
and encourage their peers who had not obtained a mammogram or Pap
smear in the last 3 years. This strategy proved to be very effective
in increasing the rate of mammography and Pap smear screening.
Comunity health advisors are successful because they amplify health
messages and facilitate entrance into otherwise foreign and possibly
intimidating local screening programs.[6,7]
Dr. Friedells approach demonstrates the importance of community
involvement and attention to culture, and is readily adapted to a
number of health care settings.
Another successful intervention incorporated low literacy cancer
modules on risk reduction, early detection, and treatment into
Kentucky literacy training programs.
A train-the-trainers program was also effective in helping nurses and
literacy teachers promote comprehension of low literacy fact sheets
provided by the Cancer Information Service.
Although low literacy is associated with many other barriers to
health care, such as low income, low level of education, and cultural
barriers that are often difficult to address, clinicians can provide
high quality care by ensuring comprehension of their advice and
In a modeling effort incorporating data from several independent
trials, Dr. P. Ley found that those patients with adequate
comprehension were two to three times more likely to have adequate
compliance and recall, and to feel satisfied with their
This section will summarize some of Doak et als suggestions for
improving communication with low literate patients, who often have
very different cultural backgrounds from that of their physicians.
Patients with low literacy skills may create their own medical
instructions on the basis of fragments of information they understand
or tune out when the physician presents them with new instructions as
they struggle to understand what was said earlier.
To overcome this barrier in addressing patients with low literacy
skills, health care providers must understand their patients
logic, language, and experience. For example, to convince a migrant
farm worker that a mammogram is important to her, the information
would be more appropriately presented in the cultural context that
screening tests could also benefit the health of the family.
Match Language to Listeners Level
Language, both written and spoken, should be matched to the level of
the listener. Words that are very clear in the physicians mind
may not be comprehensible to the patient.
Although almost everyone is familiar with the word cancer,
related words such as lesion, prognosis,
biopsy, and metastasis are not widely
understood. However, simplifying speech and text is not sufficient to
ensure understanding, especially if the message itself is not made
relevant to the patient.
Physicians and patients often employ very different logic in health
care. For instance, many patients lacking a scientific background
find it logical to stop taking medicine as directed once they begin
to feel better.
Problems With Inference
Physicians also tend to focus on epidemiologic facts and expect
patients to infer appropriate behavior. Poor readers are far less
likely to learn behavioral information through inference, and if
statistical data are presented first in printed material, patients
may tune out the message altogether because of a perceived lack of relevancy.
et al suggest several techniques to make sure patients understand
the advice they are given and remember what they have heard (see Table).
The most important part of effective communication is verifying that
the patient comprehends the information provided. An important
technique physicians should employ to ensure comprehension is to
request that patients repeat the information in their own words. This
process requires the patient to think and interpret the message in a
familiar language, registering it in the patients memory.
Yes or no questions such as Do you understand? are not
very helpful or informative.
In all cases, simple advice and instruction, especially those that
focus on behaviors, are far more likely to be effective, especially
for patients with limited literacy skills.
In his talk at the Second Annual Cancer Care Symposium, Dr. Friedell
said, Literacy is more than reading and writing. It is the
ability to access information, make decisions, and add overall to the
quality of life. In reaching out to medically underserved
populations, he said, communication is the first intervention
we must think about.
Medical students and physicians alike need to be made aware of the
relationship between literacy, cancer, and health, and to be trained
in techniques to communicate with patients of all backgrounds and
Communication is essential to allow patients to responsibly manage
their health, and clinicians need to verify that patients comprehend
the information and advice provided to them.
1. The National Work Group on Literacy and Health: Communicating with
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2. Michielutte R, Alciati MH, Arculli R: Cancer control research and
literacy. Journal of Health Care for the Poor and Underserved
3. Bradham D: Low literacy: Promoting health care within the VA
population. Abstract from The Second Annual Health Policy Symposium,
Chicago, Illinois, November 1999.
4. 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.
5. 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 84:119-121, 1994.
6. Friedell GH: Breast and cervical cancer information programs for
low literacy populations. Abstract: The Second Annual Health Policy
Symposium, Chicago, Nov 1999.
7. Friedell GH, Linville LH, Hullet S: Cancer control in rural
Appalachia. Cancer 83:1868-1871, 1998.
8. Ley P: Communicating With Patients: Improving Communication,
Satisfaction and Compliance. London, Chapman & Hall, 1993.
9. 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.