In an article published in 2002,1 Schillinger and colleagues reported that patients with diabetes who had low literacy levels had poorer diabetic outcomes as measured by hemoglobin A1C levels. This finding is extremely important when we consider that approximately 44 million U.S. adults are functionally illiterate, and that another 50 million adults display only marginal literacy skills.2 Even worse, low levels of health literacy cluster in the minority and elder communities, the same populations that carry the greatest burden of chronic illness.1,3 As the health care system expects more from patients in terms of self-care, it becomes critical to know when our health communication leads to improved health outcomes and when it fails in that effort.
To bring this issue to national attention, the Institute of Medicine released a report in April 2004 defining health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”4 This includes the ability to read and comprehend prescription bottles, appointment slips, and other essential health-related materials that must be understood to function successfully as a patient. In its broadest definition, this concept extends to oral communication and the ability to integrate new information, conceptualize risk, and take action based on new knowledge.1 Because lower levels of health literacy are associated with less knowledge about chronic disease conditions,5 poorer self-reported health status,6 and increased rates of hospitalization,7 and therefore are likely to result in higher health care costs,6 this issue cannot be ignored.
Take the case of Mrs. P, a 38-year-old woman with moderate persistent asthma who returned to my office after an absence of several months. I did not know her well, but it seemed she had visited an emergency department several times over the past months and was completely out of the various asthma inhalers and tablets that had been prescribed for her. Our discussion was frustrating, and it was not clear to me why she had stopped taking her medications as prescribed. The more specific my questions about her medications became, the more confusing her answers were.
I realized we were not communicating well, so I stepped back and probed for stressors. “How are things at home? How is your husband, how is your job, how are your kids?” All were reportedly fine. Then I asked about her childhood. “Where did you grow up and attend school?” “How many years of school did you complete?” She told me two years. “Did you ever have trouble with reading?” She said she had never learned.
“How do you know how to take your medicines?” She told me she could read numbers, so when she saw the numeral “2”, for example, she would take two pills or perhaps take one pill two times a day. In addition, she said that sometimes her kids would read for her. Suddenly, we were beginning to understand each other.
I was able to simplify her medications to one combination inhaler, and I took extra time to explain how to use it properly. She repeated the message to me and to the medical student, and we each got a hug from our patient as she left the examination room.
Mrs. P is not alone. Following are some concrete steps family physicians can take to bridge the literacy gap.
Recognize the Scope of the Problem in Your Own Community and Patient Population
In many settings in the United States, low reading levels affect one quarter or more of patients within a given population. Several valid and reliable rapid reading skills assessments exist. Both the Rapid Estimate of Adult Literacy in Medicine (REALM),8 a word identification test, and the shortened Test of Functional Health Literacy in Adults (sTOFHLA)9 have been widely used and may be useful in measuring the reading ability levels of patients.
Recognize that Shame Often Accompanies Illiteracy10
Educate staff and nurses about the nature of this problem and enlist them in helping you to tactfully identify and assist patients with low literacy levels. For example: “We would like to give you some reading material about diabetes, but many of our patients have trouble reading this. Is this going to be a difficulty for you?” Check for a surrogate reader: “Is there anyone in your family who helps you read your prescription bottles?” Be aware when patients need extra help: “Can we help you fill out these forms?” Remember that the goal is not to stigmatize poor readers, but to be able to individualize care based on the needs of patients who cannot read well.
Stage a Literacy “Walk Through” and Make Necessary Changes
Start by standing outside your office building and approach the office with members of your staff. Look for clear signage that directs patients to your office. As you enter your waiting room, are you handed a clipboard to fill out with detailed written medical information? What signs and directions are on your office walls and countertops? What written patient education materials are commonly used in your examination rooms? Does the check-out and follow-up process assume the patient has the ability to read? Bear in mind that any reading problem is complicated by poor vision. Do you have reading materials available in large-print format? Can you accommodate patients who read only in Spanish or other non-English languages?
Evaluate the Grade Level of Your Most Commonly Used Patient Handouts
Most literacy experts suggest that patient education materials be written at the third- to fifth-grade reading level.11 Most common desktop word processing programs include a tool to analyze the reading levels of written text. Once you are sensitive to reading levels, you may discover that much of what you are presenting to your patients exceeds their ability to comprehend it.
Learn About Reading Resources in Your Community
Many cities and towns have literacy councils and adult education programs. Consider referring patients to reading programs as a health intervention.
Work at Both Ends of the Problem
Have plenty of children’s books available in the waiting area. Consider involving programs such as “Reach Out and Read” in your well-child visits. Information about this program is available online at:http://www.reachoutandread.org.
As we contemplate addressing health disparities, cost-effective care for an aging population, and reducing medical errors, it will be essential to understand and address the issue of health literacy. While waiting for further research to clarify the associations linking poor reading ability to health, we will all need to shape our clinical environments to support the health of our less literate patients.