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If you deal with patients who appear to be noncompliant, frequently miss appointments, and seem to ignore medical advice, they may be suffering from poor health literacy instead of a bad attitude. Poor health literacy is a pervasive problem that accounts for an estimated $73 billion a year in unnecessary doctor visits, hospitalizations, and longer hospital stays.
Consider these statistics from the American Medical Association (AMA) Foundation and the National Adult Literacy Survey:
"Health care illiteracy is a big problem, and it’s a newly recognized problem that we need to work on to figure out what kind of interventions will be most effective. The problem crosses socioeconomic strata and affects all type of people. We also know that it’s a major problem with the elderly, who have the most health care information needs," says Ruth Murphey Parker, MD, associate professor of medicine at Emory University School of Medicine in Atlanta and chair of the AMA’s steering committee on health literacy.
"Health literacy is not just reading," says Scott Ratzan, MD, editor of the Journal of Health Communications and a member of the AMA steering committee on health literacy. "It’s being able to understand and act to make appropriate decisions." Patients need to do more than just obtain the information you are offering. They need to know what you are saying or showing them, understand it, and then act upon it, he adds.
Health illiteracy takes different forms, depending on the patient. One may not understand a consent form. Another may not understand test results or be able to fill out his or her medical history form. Others may not know what their health insurance covers or how to use a pharmacy. "Everybody doesn’t know what it means to take something four times a day. In a Medicare study, 30% of the patients didn’t know what it meant to take something on an empty stomach," Ratzan says.
Here are some other true examples of how patients didn’t understand:
— An elderly woman took her prescription for an anti-depressant only when she felt depressed because she believed that’s how it worked.
— A mother put medicine for an ear infection in her child’s ear instead of her mouth because she couldn’t understand the instructions.
— A patient told his doctor he knows he doesn’t have blood in his stool because there is no blood in his chairs at home.
— A diabetic injected his insulin into an orange every day at home just the way the diabetes educator taught him.
Shame prevents many patients from asking questions and seeking help when they don’t understand instructions, Parker points out. "You can’t tell by looking if a patient doesn’t understand. You often can’t tell by listening to them. You should ask direct questions and put them in the right context," Ratzan says.
Older patients with chronic illnesses require special care because of their high instance of low health literacy and because they may process information differently than younger patients. That’s why diabetes education needs to go far beyond just handing a patient a brochure from the American Diabetes Association, Ratzan adds. Make sure the information is in an appropriate form for the person who is going to get it, he suggests. For instance, a diabetic or elderly person may have trouble with vision. Information geared to them should not be in small print. (See "Take a tip from educators: Gear message to audience," in this issue.)
Information is a two-way street, Ratzan adds. You need to make sure you are getting the proper information from the patients, as well. For example, many patients give the wrong information on their intake forms because they can’t read or they don’t understand a question, says Ratzan.
Patients who have a low literacy level often check "no" for everything so they don’t have to explain it, he adds. "We assume that patients know basic information about allergic rhinitis, decongestants, antihistamines — but it all can be confusing," he says.
Health literacy goes beyond just understanding how to take your medicine, Ratzan says. "There are so many choices today. People need to know about appropriate self-care, appropriate prevention protection, and treatment. This ranges from breast self-examination to colon screening for people over 50 to taking baby aspirin," he says. Ratzan suggests that payer systems develop material listing preventive measures that are age- or gender-specific and make sure all their clients get them. It might be a quick list such as "10 Things You Need to Do This Year."
"The whole idea of case management is to think about all the potential ways you can make a difference and prioritize them," Ratzan says.