Toni Cordell lost her uterus because she couldn't read very well. When she was in her mid-30s, she suffered from what she called a "bulging" in her vaginal area. So she did what any woman would do: She went to see her doctor.

"That's an easy repair," her doctor said. And he scheduled her for surgery.

"Typical of most of my life, I didn't ask the right questions," says Ms. Cordell, now 62, of Newnan, GA.

The night before the surgery, she recalls sitting across from the admissions clerk at the hospital, who pushed paper after paper at her to sign. But Ms. Cordell, who read on about a fifth-grade level, knew it would take hours to read all those papers, and doubted she'd be able to understand them anyway. Plus, she says, "I knew they wouldn't let me have the surgery unless I signed." And she really needed the surgery. So she signed.

Six weeks after the surgery, during a follow-up checkup, Ms. Cordell learned the "easy repair" was actually a hysterectomy. "The concept of not realizing the magnitude of the surgery still frightens me," she says today.

Yet today-even 30 years later-hers is a situation millions of Americans find themselves in nearly every time they visit a health care professional, try to read medication information, or are presented with medical forms. Nearly half of all American adults-90 million people-have difficulty understanding and acting upon health information, notes the Institute of Medicine (IOM) in its report, "Health Literacy: A Prescription to End Confusion." The IOM, a nonprofit, non-governmental entity that provides science-based advice on matters of biomedical science, medicine and health, defines health literacy as "The ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions."¹

Health literacy is not to be confused with the ability to read, although at least a quarter of Americans read at the fifth grade level or below, while the majority of patient education materials are written at or above the 10th-grade level.² Nor does it mean that someone is learning disabled or slow. "My own father has two master's degrees in math and he can't keep the various medications he's taking straight," says Laurie Scudder, RN-C, PNP, a pediatric nurse practitioner in Columbia, MD, and board member of the Partnership for Clear Health Communication, a national coalition of more than 100 organizations working to promote awareness and solutions around the issue of low health literacy. In fact, less than half the adult population in the U.S. understands many commonly used medical words.³

And that, says the IOM's 2004 report, costs the American health system some $58 billion a year.¹

"Some studies find low health literacy is the single biggest contributor to poor health outcomes," says Ms. Scudder. For instance, she notes, about a third of the American public doesn't understand the written information they receive about their medication. "That doesn't mean these people aren't educated or aren't intelligent," she says. "It means that health care has created its own language that is increasingly difficult to follow."

Holding the Wrong Assumptions
Part of the problem, says Sunil Kripalani, MD, MSc, a health literacy researcher and assistant professor of medicine at Emory University's School of Medicine in Atlanta, GA, is the underlying assumption health care professionals have about their patients. "Most physicians assume that patients understand health care information and instructions," he says. "If anything, we should assume the opposite."

For instance, telling a patient to take a teaspoon of the medication is useless if you don't specify which teaspoon to use, says Ms. Scudder. That's why in her pediatric practice she now routinely gives her patients' parents a medicine spoon or syringe when she prescribes a liquid medication.

"There are so many times I'm in a rush and trying to educate a patient and they don't understand what I'm saying and I'm not realizing that even my simple instructions are misunderstood," says Ms. Scudder.

Overall, studies find, patients recall or comprehend as little as half of what physicians say during an office visit. Yet in one study, researchers found that physicians rarely assessed their patients' recall or comprehension of new concepts.⁴

Low Health Literacy Has Many Faces
Low health literacy affects people regardless of race, ethnicity, income level and geographic location. Of the 90 million estimated to have problems understanding health information, just 15 percent were born outside the country, and only five percent describe themselves as having a learning disability. Actually, the majority of adults with poor literacy are white, native-born Americans.⁵

Still, the IOM report finds, the problem is greatest among older people, those with limited education and those with limited proficiency in English, immigrants, for example.¹ The Center for Health Care Strategies finds that a disproportionate number of minorities and immigrants are estimated to have literacy problems, including 50 percent of Hispanics, 40 percent of African Americans, and 33 percent of Asians.² It is one major reason for the health disparity found between minorities and Caucasians, says Ms. Scudder.

Health literacy also seems to affect women more than men, possibly because women interact more with the health care system.⁶ Which, in turn, significantly affects women's health.

For instance, studies find that women who have low health literacy are significantly more likely to have never had a Pap smear in their life, or not to have had a mammogram in the past two years. They're also less likely to breastfeed.⁶

It affects women's overall quality of life, as well. One study of nearly 1,000 women with breast cancer found that nearly half said the information they received on several medical aspects of their condition was "incomprehensible or incomplete." The worse the communication with the medical staff, the study found, the worse the women's quality life remained for up to four years after their diagnosis.⁷

Other studies find that people with low health literacy are hospitalized more, have more difficulties using metered dose inhalers (for asthma and other lung conditions), and have worse HbA1c levels, an indication of how well people with diabetes manage their blood sugar levels over time,⁶ than those with higher literacy levels.

In one study of 114 patients with diabetes conducted in two public hospitals, researchers found only half of those with inadequate health literacy knew the symptoms of hypoglycemia, or low blood sugar, compared to 94 percent of those with adequate literacy.⁸

Research also suggests that people with low literacy make more medication or treatment errors^9,10 and are less likely to comply with recommended treatments.¹¹ It's a major reason, experts suspect, that only about half of all patients take prescribed medications as directed.¹²

In fact, notes an American Medical Association (AMA) committee report on the topic, health literacy correlates more strongly with overall health status than education level or any other socio-demographic variables, including income.³

A More Complex System Makes It Harder
So why has health literacy suddenly become a hot topic in health care? One reason is that medicine and health care are simply more complicated today than they were even 20 years ago, requiring more of the patient.

For instance, that same AMA report notes that 25 years ago patients with asthma were told to take the drug theophylline. "Today, they're asked to monitor their asthma with a peak flow meter, select and correctly use inhalers, sometimes use tapering dosages of steroids, and avoid triggers that exacerbate their disease," the report says.³ The same might be said of people with diabetes, who often have to test their blood sugar levels several times a day, track the results, and change their insulin injections according to the readings. If you can't read numbers, that's nearly impossible to do.

That's what nurse practitioner and diabetes educator Carmen R. Phaneuf, RN, NP, found with one of her patients. Ms. Phaneuf, who runs the diabetes program for the Parker Family Health Center in Red Bank, NJ, a free clinic for the poor and underinsured, realized the man couldn't read numbers because his glucose readings always ended in a "0." "It didn't make sense," she says. "I had to ask him if he could read and he said 'no.' I told him there was nothing to be embarrassed about."

Yet that's exactly how people feel if they can't read, or can't read well. "We have so much shame," says Ms. Cordell, who graduated high school reading on a fifth grade level. "But we have to step up out of this humiliation if we can, even though that's not easy."

That means taking more control during a health care visit, she says. "Saying, 'What is this paper you're asking me to sign? Could you explain it? Could you explain these words?' That's hard, because you think the person you're talking to is thinking that you're stupid. I'm not stupid. I just didn't have a good formal education. But it feels like this is my fault, my failure."

Creating Solutions
Tackling the health literacy issue requires a varied approach, the IOM report notes. Everything from writing patient education materials at lower reading levels, to using more pictures in such materials, to teaching health care professionals the best way to communicate complex health information without appearing condescending. Because if there's one thing patients want from their doctor, it's respect.

In fact, a recent Wall Street Journal Online/Harris Interactive health care poll found that people place more importance on their doctors' interpersonal skills than on their medical judgment or experience. Topping the list: Treating a patient with dignity and respect, listening carefully and being easy to talk to.¹³

To that end, medical schools have begun putting more emphasis on communication issues in their curriculum. Until fairly recently, says Dr. Kripalani, "physicians spent a tremendous amount of energy and education learning how to diagnose and treat an illness, but relatively little attention was given to effectively communicating that information about that illness to patients."

That's slowly beginning to change, according to Deborah Danoff, MD, associate vice president of the division of medical education for the American Association of Medical Colleges. "Health literacy is receiving much more attention since the IOM report came out," she says, with medical schools now beginning to develop resources and teaching opportunities on the topic. "Until the IOM report, I don't think people were aware of how significant and severe the problem was."

The American Medical Association Foundation, along with pharmaceutical company Pfizer, Inc., are also taking a leadership role in addressing the issue. The two have joined together to raise awareness and understanding of health literacy among health care professionals and to develop tools to improve communication with patients.

That includes the Pfizer Health Literacy Initiative Scholar Awards. Dr. Kripalani uses his, in part, to conduct a regular workshop on clear health communication for internal medicine residents. As part of the training strategy, he videotapes residents with a patient actor, and meets with residents one-on-one to review their communication style. "They are commonly surprised by how much talking they do compared to the patient, and by the language they use," he says. "They're quick to admit their language is too complicated."

So he teaches them to simplify things. To write down instructions, draw simple pictures, use three-dimensional models to explain things, and, above all, be specific. "If the doctor says, 'I want you to get some more aerobic exercise,' what does that mean? How much is more? What does aerobic mean? It's much more effective to say something like, 'I want you to walk around your neighborhood for 30 minutes a day, four days a week, at a pace fast enough to feel your heart beat faster.'''

Most important is the "teach-back" method, in which the health care professional explains a concept, then has the patient explain it back. "So the doctor might say, 'We talked about a few salty foods you should avoid to control your blood pressure. Tell me two foods you're willing to give up to help your blood pressure,'" says Kripalani.

Communicate in such a way, says literacy advocate Toni Cordell, and health care professionals will gain their patient's undying loyalty. That's how she feels about the urologist who operated on her two years ago. "He talks to me face to face while I'm fully dressed, asks me about my symptoms, gives me clear information. I feel like we're partners in the decision making and that feels really good."X

What IS "Clear Communication?"
What does communicating health information clearly really mean? Well, just compare these two explanations from a doctor, each explaining to a patient the lump found in her breast.

VERSION 1: "You have a lesion in your mediastinum that is two centimeters. We need to perform a fine needle aspiration in order to rule out metastatic adenocarcinoma to a lymph node."

VERSION 2: "You have a small lump inside your chest. The way to figure out what it is, is to stick a small needle in it. It is important to do this so we can know how to give you the best treatment."¹⁵

The first explanation is targeted towards someone with an 11th -grade reading level; the second, to someone with a third-grade reading level.X

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© 2004 The National Women's Health Resource Center. All rights reserved. Reproduction of material published in the National Women's Health Report Online is encouraged with written permission from NWHRC.

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