Quick ways to recognize—and cope with--illiteracy

Using drawings and other creative approaches can help you break through the reading barrier

From the April 2000 ACP-ASIM Observer, copyright © 2000 by the American College of Physicians-American Society of Internal Medicine.

By Christine Kuehn Kelly

When Mark V. Williams, FACP, talks about illiteracy, he recalls a set of patient education brochures that were designed to help diabetic patients manage their illness. "One of the brochures had a picture of an upside down bottle to indicate that all the medicine should be taken," recalled Dr. Williams, associate professor of medicine at Emory University School of Medicine in Atlanta. One patient, however, thought the picture portrayed a urine collection bottle. "He thought the drawing meant you should drink your urine."

The story illustrates the challenges physicians face helping illiterate patients understand—and comply with—the treatments they prescribe. Literacy experts say that it is critical to spend extra time with illiterate patients because they are less likely to be compliant and more likely to have been hospitalized recently. Those with low levels of literacy also frequently miss out on standard preventive care and screening.

Statistics bear that out. A two-year study at Grady Memorial Hospital in Atlanta found that the functionally illiterate were twice as likely to be hospitalized as study subjects with adequate literacy. And in another study, almost 40% of Louisiana women with reading levels below ninth grade had no idea what mammograms were used for.

Illiteracy is widespread in the United States. According to the National Adult Literacy Survey, up to 44 million Americans are functionally illiterate, and another 50 million have only marginal reading skills. In other words, roughly half of the adult U.S. population has difficulty reading or trouble calculating numbers. People over age 65 make up the majority of the population with reading problems, along with the approximately 10 million Latinos in this country who don't speak any English. Low income is typically another predictor of illiteracy.

It can be difficult, however, to identify illiteracy, in part because it carries such a stigma. One study found that some patients find literacy problems more embarrassing than an incestuous relationship. "If you ask patients if they can read, you will usually be told yes," said health literacy expert Ruth M. Parker, FACP, assistant professor of medicine at Emory. "They are unlikely to admit that they are illiterate."

The good news is that residents are in a position to help illiterate patients with comprehension problems. The interactions between residents and patients may be brief, but they are intense. "We come up with the plans," said Neil Kripalani, MD, a third-year internal medicine resident at Emory-affiliated Grady Memorial Hospital. "We have to ensure they are put into action, especially when the patient has trouble understanding."

Here are some tips to identify patients with reading problems and how to help them:

• Look for signs. The first step is to identify patients who are functionally illiterate: unable to read and understand how to take medications or when to come in for a follow-up appointment. But experts say that identifying illiteracy is not always easy. You can't depend on appearances; many well-dressed, even articulate patients have literacy problems. "You won't see illiteracy unless you look for it," said Dr. Parker.

Fortunately, though, there are some fast, easy ways to help confirm your suspicions that a patient may have literacy problems. Dr. Parker, for example, carries a pill bottle with her. "I take it out and ask patients to read it and tell me how they would take the medication," she said.

Another technique is to tell your patients you want to test their vision and ask them to read a few sentences from a pamphlet. If they give you the age-old excuse that they left their reading glasses at home, be wary.

Several quick and easy-to-use tests can help measure your patients' reading comprehension and numerical skills. One, known as the Test of Functional Health Literacy in Adults (TOFHLA), can be administered in less than 10 minutes. Another test, the Rapid Estimate of Adult Literacy in Medicine (REALM), includes three sets of 22 words to help estimate a patient's reading level in less than five minutes. (For more information on these tests, see "Two ways to test your patients' reading levels," next page.)

• Keep it simple. These tests can help identify patients with reading problems, but they are useless if you don't make changes in how you communicate, said Terry C. Davis, PhD, professor of medicine at Louisiana State University, Shreveport, who spent four years developing the REALM test.

A place to start, according to Dr. Williams, is to skip the medical jargon and the pathophysiology. Housestaff often feel nervous about their status as physicians and tend to hide behind medical terms they learned in school. Patients who receive a new diagnosis, however, want basic information about how to manage their condition. Save detailed explanations about the problem for later.

When you're talking, slow down and choose three main points that you want to communicate. (Patients rarely remember more than that.) Try to focus on the following key points: What has changed? What are the new medications and how should they be taken? What are the follow-up actions?

"Remember to keep explanations short," said Dr. Kripalani from Emory. "Patients can only retain about 20% of what they've heard." He said he mixes medical and lay terms, using both "hypertension" and "high blood pressure" in the same sentence. "I've had engineers who didn't know they were the same thing," he said. He pointed out that until someone has had a certain disease, they probably don't have the vocabulary to describe it.

"I try to take a broad approach so that all patients will understand me," Dr. Kripalani said. "Rather than having one type of communication for the well-educated and one for the low-literacy patients, I keep my explanations simple. If patients want more information, they will bring it up on their own."

• Get creative. As Dr. Williams' story about the diabetes brochure indicates—and studies confirm—printed materials, even those written at a basic reading level, don't always improve a poor reader's knowledge or compliance.

Dr. Davis explained that the best way to help illiterate patients is to use the "teach back" technique. Start by telling patients that you want to make sure you understand each other and ask them to repeat your instructions. It is also helpful to demonstrate techniques—how to test for blood glucose levels, for example—that patients may need to use.

If you do use printed materials, don't be afraid to be creative in reviewing them with patients. For example, because drug dosing is so important, you may want to make a quick drawing of a pill and then a sun or moon to show the time of day to take it. "Our medical clinic has printed cards with drawings of sunrise, noon and night," said Dr. Kripalani. You can glue a pill under the appropriate time of day to make it clear that the drawing is telling patients when to take medicine and which pill they should be taking.

Another strategy is to write out instructions and underline important parts. The idea is that even if your patient can't read, there may be someone at home who can. And before you encounter a low-reading patient, find out whether hospital nurse educators and pharmacists are available to go over prescriptions and patient instructions.

Dr. Parker admitted that helping functionally illiterate patients is not easy, but she said that physicians need to rise to the challenge. "It's not the way we were taught to practice," she said. "But if I make good diagnostic and therapeutic decisions—and my patients don't understand and comply with them—then I haven't delivered good care."

Christine Kuehn Kelly is a Philadelphia-based freelance writer specializing in health care.

Two ways to test your patients' reading levels

"A normal blood sugar is a range between 60 and 140. Today yours is 150. Is your blood sugar normal?"

How many of your patients would be able to accurately respond to this question from the Test of Functional Health Literacy in Adults (TOFHLA)? In one survey of 3,200 elderly patients, 68% could not answer that question correctly.

TOFHLA, which includes language and symbols found in hospital settings, measures reading comprehension and numerical skills. Terms on the test range from fat and flu to osteoporosis and constipation. A short version of the test—S-TOFHLA—can be administered in five to 10 minutes.

The Rapid Estimate of Adult Literacy in Medicine (REALM) includes three lists of 22 words that can estimate a patient's reading level in less than five minutes.

For more information about TOFHLA, contact S. Vaughn at the Center for the Study of Adult Literacy at Georgia State University (404-651-1400; e-mail: alcsvv@langate.gsu.edu). The test is available in English and Spanish and large-print editions. There is a small charge for copying and postage.

For information about the REALM test, send $10 for a sample kit to Terry C. Davis, PhD, LSU Medical Center, 1501 Kings Highway, Shreveport, LA 71130-3932.

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