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Health Illiteracy Interferes With Care

Cheryl A. Thompson

The man, a respected church deacon who had prostate cancer, looked at the label on one of his bottles of medicine. With assistance, he haltingly read the label aloud. He told the interviewer that the capsules were to be taken twice a day. But, he noted, the label "does not say when to take" the capsules.

The scene, one in a series of patient encounters captured on videotape, illustrates the effect that illiteracy has on health care, said Mark V. Williams, an associate professor of medicine at Emory University in Atlanta. Elsewhere on the videotape, a mother selected an acetaminophen product for her two-year-old, examined the unopened box, but could not state the appropriate dose for the girl. In fact, the mother guessed on a dose that would have been too much for an adult.

Williams showed the videotape during a May conference of the National Council on Patient Information and Education in Bethesda, Maryland.

According to the most recent government survey on adult literacy, performed in 1992, 21% of Americans 16 years or older have only basic reading and writing skills. Another 27% cannot integrate multiple pieces of information when the text is dense or lengthy or lacks organizational aids, such as headings.

Compounding the problem, said Williams, is health care professionals' inability to distinguish between the illiterate and the literate. And then there is the health care system’s expectation that patients will assess their illnesses and treat them accordingly.

Patients "don't come with a big ‘L’ [on their forehead] indicating that they have literacy skills," Williams said. Yet the health care system and clinicians expect patients with asthma, for example, to master the use of a metered-dose inhaler and a peak-flow meter, he said.

An adequate or functional level of health literacy means that a person can "read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient," the American Medical Association’s Council on Scientific Affairs stated in 1999.

The National Academy on an Aging Society, with data from the 1992 National Adult Literacy Survey and other sources, estimated in 1999 that low health literacy increased health care expenditures by about $73 billion (in 1998 health care dollars). Most of this was spent on longer hospital stays.

Williams, from research conducted at Atlanta’s Grady Memorial Hospital, found that adults with a low functional level of health literacy had a 52% greater chance of hospitalization within two years than did adults with adequate literacy levels. Also, the adults with inadequate health literacy levels had less knowledge of self-care and a worse record of compliance with therapy than the other adults.

Richard N. Herrier, a clinical assistant professor at the University of Arizona College of Pharmacy in Tucson, recalled at the conference how pharmacists, including himself, in the Indian Health Service (IHS) tackled the problem of identifying which patients were literate and which were not.

"We assumed that everyone had a literacy problem," Herrier said. And with good reason. His patients did not have a native written language. On top of that, a native language might not have a phrase equivalent to a medical condition, as was the case with the Navajo language, which did not recognize high blood pressure.

Pharmacists outside the IHS, Herrier said, "tend to give patients overwhelming amounts of information ... and tend to rely a lot on written material." Yet, he has observed that three in four patients, while leaving a pharmacy, detach the stapled-on medication information leaflet from the prescription bag and toss the leaflet in the trash can.

And providing printed material in the patient's spoken language, if not English, may not help. Herrier said less than 10% of Spanish-speaking patients wanted printed material in Spanish. Their education had been in English, he said, or the person at home who could read did so in English, not Spanish.

Herrier said the goal of any effort to inform patients must be to verify that the patient understands the information. Dispense small amounts of information at a time. Ask open-ended questions so that it is easy to spot an inappropriate answer, which would indicate a lack of understanding. Avoid questions that can be answered with yes or no.

To counsel patients with a low literacy level, Herrier advised following the Army’s program for training paratroopers, which continually builds on the previous skill level. The paratrooper trainee starts jumping one foot, then six feet, and thereby learns to land without breaking a leg before ever jumping out of a plane. Pharmacists, he said, tend to explain a medication therapy as if they would have a person jump from a plane immediately after the first encounter.

Selected Literature on Health Literacy

  • Health literacy: advancing public policy (proceedings of a conference). New York, NY: Pfizer; 2000.
  • Health literacy introductory kit (contains videotape of patient vignettes, American Medical Association Council of Scientific Affairs’ report on health literacy, fact sheets, and discussion guide). $25 for AMA nonmembers. Contact Joanne G. Schwartzberg at 312-464-5355 or
  • Giorgianni SJ, ed. Responding to the challenge of health literacy (PDF). New York, NY: Pfizer; 2001.
  • National Library of Medicine. Current bibliographies in medicine: health literacy (PDF). Rockville, MD: U.S. Department of Health and Human Services; 2000.