A Silent Epidemic

By Sandra G. Boodman
Washington Post Staff Writer
Tuesday, February 20, 2007

Toni Cordell recalled feeling reassured when her gynecologist said her problem could be fixed with an "easy repair" involving surgery. She readily agreed, she said, barely glancing at the consent forms because reading was difficult for her. She said she didn't ask any questions because she didn't know what to say.

During a routine postoperative checkup several weeks later, Cordell vividly remembers, she was stunned when the nurse asked, "How are you since your hysterectomy?"

"All I could think of was how could I have been so stupid?" Cordell said of that day 30 years ago. "I just wanted to scream. I really didn't know I was surrendering part of my body."

Similar events occur every day in every hospital around the country, medical experts say, a consequence of the pervasive and largely unrecognized problem known as low "health literacy." Cordell, who lives in Charlotte and received remedial reading instruction as an adult, said she believes her case was typical: She graduated from high school reading at a fifth-grade level, a deficiency she long sought to hide. She attributes her poor reading skills to a combination of dyslexia and a childhood medical condition.

In a 2004 report, the Institute of Medicine defined health literacy as the ability to obtain and understand basic health information and services needed to make informed decisions. Low health literacy, the institute noted, affects an estimated 90 million Americans, who struggle to understand what a doctor has told them or to comply with treatment recommendations as essential as taking the proper dose of medication. A 1999 report by the American Medical Association found that consent forms and other medical forms are typically written at the graduate school level, although the average American adult reads at the eighth-grade level.

Earlier this month a Chicago-based organization known as the Joint Commission, which accredits the nation's hospitals and clinics, unveiled a list of 35 recommendations to address the problem, which is estimated to cost taxpayers $58 billion annually. Among the recommendations developed by a panel of experts: adoption of communication techniques proven to be effective with patients, simplification of jargon-laden consent forms, and development of patient-friendly navigation signs, which may include the use of pictures or icons that are also recognizable to non-English speakers.

Low health literacy "is a silent epidemic that threatens the quality of health care," said Dennis O'Leary, commission president. Too many physicians and administrators, he said, fail to grasp the dimensions of a problem that affects every aspect of medical care and is a major impediment to patient safety. In some cases, cultural and language differences are a barrier, but experts emphasize that the majority of those with low health literacy are native-born and white.

Interest in health literacy comes at a time when Americans are expected to assume ever-greater responsibility for their care and are discharged from hospitals sicker and quicker, experts agree. Many patients are expected to comply with sophisticated drug regimens, to adjust or calculate medication doses or to manage complicated equipment with little training and less supervision. A comprehensive national assessment of adult literacy conducted in 2003 by the U.S. Department of Education found that 43 percent of adults have basic or below-basic reading skills -- they read at roughly a fifth-grade level or lower -- and 5 percent are not literate in English, in some cases because it is not their first language.

The picture is even more dismal when it comes to numerical skills: Fifty-five percent of adults have basic or below-basic quantitative abilities; many are unable to solve simple arithmetic problems, including addition.

The statistics don't differ much from the literacy assessment conducted a decade earlier. That survey found that many Americans could not determine the difference between two prices using a calculator or were unable to write a brief letter explaining a credit card billing error. Studies of health literacy have found that a surprisingly large number of adults were perplexed by the meaning of the term "orally," didn't know the difference between a teaspoon and tablespoon and were unable to calculate the proper dose of medicine. Low health literacy is more common among elderly or low-income patients and those with a chronic illness, researchers say.

A study published in the Journal of the American Medical Association in 1995 found that more than 80 percent of patients treated at two of the nation's largest public hospitals could not understand instructions written at the fourth-grade level for the preparation of gastrointestinal X-rays known as an upper GI series. A 1999 study of more than 3,200 Medicare recipients found that one in three native-born patients could not answer a question about normal blood sugar readings even after being given a paper to read that listed the correct answer. And a study of 2,500 elderly patients published last year in the Journal of General Internal Medicine reported that patients with low health literacy were twice as likely to die during a five-year period as those with adequate skills, regardless of age, race or income.

Sometimes language is a factor. In Spanish, for example, the word "once" means 11, not "once" as is often written on prescription labels. Patients have been treated for accidental overdoses of blood pressure medication and other drugs as a result of such linguistic confusion, said Ronald M. Davis, president-elect of the American Medical Association, who chaired the Joint Commission panel.

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