Spring 2003

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NIDCD Working Group: Better Communication Needed to Reduce Infants ‘Lost to Follow-Up’

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Why Johnny Is Sick:
Researcher Strengthens Health, Literacy Link

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Information Exchange

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WISE EARS!^® Update

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New Resources

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Research Report

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Why Johnny Is Sick:  Researcher Strengthens Health, Literacy Link

If Johnny can't read, then his health is likely to suffer too someday.

Such are the stark findings of Dr. Dean Schillinger, University of California, San Francisco, associate professor of medicine at San Francisco General Hospital, whose research is drawing a clearer connection between health literacy and the chances of beating, or at least successfully controlling, chronic illness. On Oct. 21, 2002, Schillinger delivered the first lecture in a series on health literacy at the National Institutes of Health. The lecture, titled "Babel Babble: What is the Doctor Saying? What is the Patient Hearing?", was sponsored by the National Institute on Deafness and Other Communication Disorders.

A person's health-literacy skill is his or her ability to read and understand health information and to make decisions based on that information, whether it's following the directions on a bottle of Tylenol or learning on a health Web site how to keep one's cholesterol in check. And one strong measure of a person's health literacy is his or her ability to read in general. If someone struggles to read a sign or bus schedule, for example, how can she or he be expected to read and accurately interpret directions for taking a prescription medication?

Schillinger pointed out that a person's literacy is not a matter of "are you or aren't you able to read?" There are degrees. According to the 1993 National Adult Literacy Survey, 10 to 22 percent of Americans are at the bottommost level of literacy, meaning that they are unable to read a medicine bottle or poison warning. Another 18 to 26 percent are considered functionally illiterate, meaning that they have trouble filling out forms for a job application. The survey also found that, on average, the reading level in the United States is somewhere between the eighth and ninth grades, while the average reading level of Medicaid recipients is significantly lower -- at the fifth grade.

Low literacy is a symptom of a number of underlying factors, according to Schillinger. And it is not a lifelong constant. One surprising finding is that older adults who may have had fine reading, writing, and thinking skills in younger days may have difficulty as they age with reading and understanding information. Vision problems, poverty, learning disabilities, immigration and minority status, and poor education also can contribute to low literacy. Two-thirds of people ages 65 and older have poor literacy skills, while 25 percent of immigrants have poor literacy.

Low health literacy can be tied to three big negatives in the healthcare arena, said Schillinger. First, healthcare costs are generally higher for patients with low literacy. A 1992 study at the University of Arizona, Tucson, found that healthcare costs for patients enrolled in Medicare who were identified with low health-literacy skills were more than four times as high as costs for patients with high literacy -- roughly $13,000 per year compared to $3,000 per year. Second, a patient's own health assessment is usually gloomier if he or she is challenged by low literacy. In a study conducted in Atlanta, Ga., and Torrance, Calif., patients who had low health literacy were more likely to report their health as poor compared with patients who had adequate literacy.

And third, patients with low health literacy tend to be less successful in managing chronic disease.

In a study on the effects of health literacy on blood-sugar control in Type II diabetics, Schillinger and his colleagues at San Francisco General Hospital found that patients with high literacy were more likely to have lower long-term blood-sugar concentrations -- what all diabetics should strive for -- while those with low literacy were more likely to have higher levels of glucose in the blood, or worse blood-sugar control. Complications associated with diabetes also increased as literacy decreased. Patients with low literacy developed retinopathy more than twice as often as people with high literacy did, despite the fact that patients with known vision problems were excluded from the study. Retinopathy is a condition that damages the eye's retina, the sensory membrane that lines the eye, and can cause blindness.

Low literacy also may contribute to health disparities. Women, minorities, and older people were much more likely than others in the study to experience problems, the researchers found, with women twice as likely, and seniors five times as likely, to have poor blood-sugar control.

Schillinger describes the current healthcare system as being designed to meet the needs of only the most literate. This, he said, must be changed if we are going to reduce disparities. "In our society, while money may be power, literacy really is power," said Schillinger. "Literacy," he emphasized, "is the ability to advocate for oneself in a highly competitive healthcare system."

People who do not have basic literacy skills usually have limited access to health information, and their understanding about health-related matters is generally poor to begin with. They also may have trouble comprehending written health information that is given to them. In one nationwide study, researchers at Louisiana State University, Shreveport, found that the reading levels of materials given to patients were at levels five to seven years beyond the patients' ability to read them.

And health communicators take note: 100 percent of health-related Web sites written in English, and 86 percent of Spanish health sites, were found to be written at the twelfth-grade reading level -- despite the adult literacy survey's finding that the average Medicaid recipient reads at the fifth-grade level.

Schillinger contends that literacy not only affects how well a patient understands a prescription label, brochure, or Web page, but it also may influence how well a patient grasps what a doctor is saying in a typical one-on-one conversation. In a study on the same diabetes patients, he and researchers at San Francisco General Hospital found that 32 percent of the patients said that their doctor often uses words that they don't understand. These words are not necessarily medical jargon, but may be everyday words used in specialized ways or common words that are simply beyond the experience of the patients. Additionally, more than one-fourth of patients said that their doctor gave them test results without providing an explanation.

"And these doctors are working in a public hospital because they really want to work in a public hospital," said Schillinger. "Their mission is to take care of vulnerable patients. So this is, in many ways, a best-case scenario."

Despite the discouraging numbers, Schillinger sees a way out. He described a communication method he and colleagues at San Francisco General Hospital have developed called "closing the loop," which is based on the "teach-back" method used in education. Each time the doctor introduces a new health concept to the patient, such as "Take this pill twice a day to help thin your blood," the doctor asks the patient to repeat the message in his or her own words. If the patient gets it right, great. He is more likely to remember the message, having said it himself. If the patient gets it wrong, the doctor has a chance to review the information until the patient does understand. And with understanding comes adherence.

Schillinger and others have assessed how frequently doctors at San Francisco General practice the feedback loop, as well as the loop's effectiveness in helping diabetic patients maintain blood-sugar control. The results are published in the January 2003 issue of Archives of Internal Medicine.

Other strategies Schillinger is testing are the use of weekly phone messages, designed by patients for patients, and group visits in which patients with the same illness meet together with a doctor and health educator to discuss questions they may have, common problems, and possible solutions to those problems.

"In the United States, we've all known that education is related to health, but we felt that it was an immutable characteristic of a population, and not something that can be changed," said Schillinger. But what's so compelling about literacy, he said, is that it can be changed, and the impact can be great, particularly during the clinical encounter between patient and doctor.