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A Health Literacy Crisis

Older woman examines pill bottles


The mother, clearly agitated, came to my office holding a bottle of liquid antibiotic prescribed for her daughter’s ear infection. She asked, “How the hell am I supposed to get this into her ear?”

She could not read the directions, which said to give the medication by mouth.

A survey conducted between 2008 and 2010 by the Adult Literacy Program at Einstein’s Fisher Landau Center for the Treatment of Learning Disabilities found that almost 75 percent of our patients with reading and learning disabilities did not tell their doctors they could not read well enough to use written materials to guide their use of medicine or medical procedures.

We were surprised at these findings, because the majority of these 49 adults had participated in our literacy program. They had been exposed to a great deal of information about the importance of sharing their literacy problems with their physicians. In talking with many of these patients later, what I discovered was that the lack of literacy skills is a devastating problem for adults, and many of them were simply too embarrassed to let their doctors in on their secret.

Despite our patients’ shame, they are far from alone. In 2006, it was estimated that 75 million adults in the United States could not read well enough to understand basic health information presented in simple documents, identify dates on an appointment card or interpret prescription drug labels.

Their literacy may be hampered by their having English as their second language, poor educational backgrounds or learning disabilities.

And low health literacy is not a problem just for those 75 million adults. It has a larger societal cost.

The most recent estimates indicate that low health literacy costs the U.S. economy between $106 and $238 billion each year. Health literacy is a stronger predictor of health outcomes than income, employment stats, education or race/ethnicity. Low levels of health literacy are associated with poorer health outcomes, including increased rates of hospitalization and increased mortality.

Although so many people are affected, doctors don’t always seem to know that their patients cannot follow their written instructions, may be confused by oral instructions and are too embarrassed to inform their doctors or ask questions.

What is a doctor to do? Ask! The AMA Health Literacy Educational Toolkit has identified two simple questions that can be posed to patients to help get a feel for their health literacy skills. Health professionals should make these two questions part of their standard screening:

• “How often do you need to have someone help you when you read instructions, pamphlets or other written material from you doctor or pharmacy?” If patients answer “Sometimes,” “Often” or “Always,” they need some support.

• “How confident are you when filling out medical forms by yourself?” If patients answer “Somewhat,” “A little bit” or “Not at all,” they need some help.

Each of these questions adds less than 60 seconds to a typical office visit.

If it appears a patient needs support, here are a few simple interventions that can help doctors and patients communicate clearly:

• Suggest that the patient have a family member or friend present when the patient receives information or instructions.

• Ask an office worker to offer assistance in completing forms.

• Confirm that the patient understands by asking him or her to repeat information or instructions.

Finally, doctors can encourage questions to help ensure that the patient is leaving with the knowledge needed to care for himself or herself.

The AMA toolkit has a number of other suggestions to help make the doctor’s office a comfortable, shame-free environment where all patients can get the help they need. Opening up these lines of communication will empower patients, making their lives and those of their family members safer and more independent.

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Comments on this entry are closed.

  • Ruth Kaminer June 18, 2013, 8:46 PM

    The episode described also happened to a nurse practitioner with whom I worked. Asking about parent literacy is important, as the blog states. Concrete verbal instructions, eg “the ear medicine goes in the mouth” also help.

  • Ruth Gottesman June 18, 2013, 10:18 PM

    Clearly written, right on target about a patient’s “hidden handicap,” the extremely low reading level found in a wide swath of adults in our country. Dr. Kelly gives physicians some suggestions that are easy to carry out and can make a real difference in patient compliance.

  • Rev Cassandra BURTON June 19, 2013, 5:37 AM

    A bigger problem than the general population has knowledge of is the growing number of persons who can not read.

  • Jane Farcas June 26, 2013, 3:53 PM

    This article should be required reading for all medical students and practicing physicians. If doctors were better informed about literacy issues, patients would not only be better served but they would be spared embarrassment and humiliation as well. One of my family members had very poor reading and writing skills. She was always anxious that she would be required to fill out forms in the doctor’s office. At the time, my solution to the problem was to suggest that she tell the receptionist that she had left her reading glasses at home and could not see to fill out the form. This worked well for her; but how much better it would have been if the health care providers had been aware of this issue.