A 16-year-old boy came to my office with his father because of the son’s anger management and behavior problems, both at home and school. When I spoke with the boy alone, he expressed frustration that he could not read. The patient added that no one at school, not even his closest friends, knew the truth. When I asked the patient about his coping strategies, he said that during a typical test he would ask his teachers what the questions and choices meant, and then he would pick an answer from the explanation. The teachers never questioned the patient’s reading skills. Moreover, the patient felt that his father seemed indifferent to his illiteracy and did not place much importance on his school performance. The father admitted to knowing about his son’s struggle with reading for some time but was unsure if his son had been formally tested. English is the primary language spoken in the home. How can family physicians convince patients that having strong reading skills is important? What are practical, office-based strategies to deal with this situation? To what extent should family physicians screen patients for literacy?
Low literacy is more prevalent than previously thought. In 2003, almost 25 percent of Americans (45 million persons) who spoke English as their first language had the lowest level of literacy skills (i.e., level 1 out of 5) in reading, writing, and functioning in the English language.1,2 Persons with low literacy have difficulty performing common tasks such as filling out a deposit slip, locating the time and place of a meeting, identifying specific information in a news article, and reading prescription drug labels.1,3
In a typical primary care practice, about 20 percent of adult Americans have serious literacy limitations (i.e., sixth-grade reading level or lower).3 Low literacy can impact a patient’s understanding of illness, including diagnosis and treatment options; compliance with medication regimens; and comprehension of common medical forms (e.g., insurance enrollment, medical history, patient consent forms). In an era of cost-conscious medical care and pay-for-performance, low literacy among patients also can significantly impact physician reimbursement. To provide high-quality care for patients with low literacy, physicians often end up spending considerable time providing face-to-face patient education and addressing issues related to low literacy. This is time that is not typically reimbursed by insurance carriers.
In the scenario, a careful history showed that the patient has difficulty reading. The patient’s struggle with literacy, and his resultant embarrassment, may have subsequently led to his misbehavior. The father’s apparent casual attitude about his son’s literacy problem may be understandable if he himself has difficulty reading; adults who do not read well are not likely to place a high value on the reading skills of their children. Therefore, school-age or adult patients should be questioned carefully if they present to their family physicians with behavior issues, anger, avoidance, or indifference in connection with activities that might be related to low literacy or in response to physician inquiries.
The physician should reassure the patient and his father that the patient does not have a medical problem, but that he may need remedial help with his reading skills. Ideally, the entire family, including the father, should be involved in negotiating a constructive solution. For this adolescent, community- and school-based literacy resources (e.g., the school guidance counselor) would be helpful. After the physician and family have openly discussed the patient’s low literacy and created a plan, the patient and his father should return to the physician’s office in a few weeks for follow-up.
In this case, the adolescent admitted to his struggles, which is unusual. Other patients may not admit to reading problems because of shame, past failures to learn, and fear of consequences (e.g., losing a job or peer-group status).4 Although clues to low literacy may be few and subtle, some examples are patients who decline to fill out forms (or ask to take these forms home first), read a brochure, or sign their name. Patients with low literacy may hold forms upside down without realizing it or may not ask their physicians questions. Physicians should not make a judgment based on appearances. A study evaluating the literacy skills of 100 patients at a public health hospital showed that, although nearly all of the patients were articulate in conversation, their reading levels differed greatly.5 A roughly dressed man tested above a high-school reading level, whereas a sharply dressed, wealthy woman who spoke English as her first language tested at a second-grade level.5
In clinical practice, family physicians seldom are able to discern the literacy levels of their patients. Although many literacy-testing instruments are available,6 testing may not be efficient or productive in a busy physician’s office and requires specialized interpretation. Instead, physicians should refer patients to literacy programs where patients can be tested and receive specialized guidance based on the results. A possible exception is if a physician is interested in conducting literacy research or determining a “literacy profile” for his or her specific patient population.
When patients do not reveal their literacy limitations, miscommunications about health issues can occur. Family physicians can foster better understanding in patients across all literacy levels by using plain language, simple pictures and illustrations, and other nonverbal patient education materials (e.g., instructional videos). In addition, a simple strategy is to have patients explain to the physician in their own words the information that was provided (“teach back”).2,7 The teach back method can help ensure that patients grasp one or two key take-home messages from a typical 15-minute office visit.2,7
Creating a brief list of community literacy resources is a fast and easy way to help patients receive crucial literacy assistance. For example, patients may receive help from local libraries, community colleges, human services offices, and the office of the state director of adult education. Other resources include the America’s Literacy Directory (http://www.literacydirectory.org), the National Literacy Hotline (800–228–8813), the National Center for Family Literacy (http://www.famlit.org), and ProLiteracy Worldwide (http://www.proliteracy.org).