In no other subspecialty of ophthalmology is communication between the patient and physician more important than in glaucoma. Adherence to a medical regimen requires that patients understand the instructions and administer their eye drops on a consistent schedule. They must also understand the consequences of noncompliance. Thus, ensuring health literacy among patients is of paramount importance.
WHAT THE STATISTICS MEAN
The Institute of Medicine defines health literacy as the
ability to obtain, process, and understand basic health
information and services needed to make appropriate
health decisions and to follow instructions for treatment.1
The National Adult Literacy Survey2 found that approximately
44 million Americans were functionally illiterate
and that another 50 million had marginal literacy skills.
Assuming that basic literacy is a prerequisite for health literacy,
at least 90 million Americans, approximately onethird
of the population, are disadvantaged in the health
care system. Their inability to understand the nuances of
their illness is a leading cause of health disparities.3
The National Assessment of Adult Literacy (NAAL) survey, 4 completed in 2003, reported that only 13% of the US population had proficient health literacy skills, while 53% had intermediate, 22% basic, and 14% had below basic skills. To put this information in context, individuals who are proficient can read and understand most textual and numerical information in a health care encounter. For example, they can read a complex document to define a medical term or identify which legal documents pertain to a given healthrelated situation. People with intermediate skills have some difficulty dealing with complicated text and documents, but they can determine the healthy weight based on body mass index or identify at what time to take medications relative to meals based on a prescription label. A person with basic skills can read and understand a short explanatory pamphlet and give two reasons why someone without symptoms should be screened for a given disease. An individual with below basic skills can spot an appointment date on a card or identify how often someone should have a specific medical test based on the information in a pamphlet.3
Even individuals with adequate-to-good literacy skills may find the health care labyrinth difficult to navigate. Understanding health information requires more than basic reading literacy to interpret instructions and use that information to make a decision. With medical advances, the number of potential treatments increases as well as the need for patients to keep up with a complex medical regimen. Several studies have found that the average consent form and patient-education brochure are written at a tenth-grade reading level. It is recommended that they be written at an eighth-grade reading level to facilitate patients' comprehension.3
Conversely, high-level professionals may suffer from information overload. Greater access to health information on the Internet may confuse these patients, because they are not capable of appropriately prioritizing their findings. Too much information can be as destructive as too little, especially if a patient decides to alter his or her treatment regimen based on this independent research.
The problem with poor health literacy is that it leads to suboptimal outcomes. Poor health literacy is a stronger predictor of a person's health than age, income, employment status, educational level, or race.5 With glaucoma, this translates into visual impairment. If one extrapolates the results found with other chronic diseases such as asthma and diabetes, poor health literacy correlates with poor outcomes due to patients' decreased awareness of preventive health measures and their limited ability to follow self-care instructions to manage their disease. The problem grows because many glaucoma patients have other chronic health issues. It becomes a financial strain on the health system due to errors in medication leading to increased hospitalizations, overuse of the emergency department, and a greater severity of illness and the resulting disability.1,3-5
POPULATIONS AT RISK
Based on the NAAL,4 certain segments of the population
are at greater risk of the aforementioned problems due to basic or below basic health literacy scores. The
elderly, members of lower socioeconomic groups,
Medicare and Medicaid recipients (half read below the
fifth-grade level), the uninsured, individuals who did not
complete high school, minority and immigrant populations,
and people with chronic mental and/or physical
conditions have lower levels of literacy.1,3 Several studies
of glaucoma patients demonstrate this problem.
Muir and associates6 looked at 197 patients with openangle glaucoma at the Duke Eye Center in Durham, North Carolina, and administered the Rapid Assessment of Adult Literacy in Medicine test. Of the 146 who reported completing high school, 39% read at or below the eighth-grade level. Pharmacy refill data found a positive relationship between health literacy scores and the number of refills obtained, with patients who had reading skills above the ninth-grade level filling their prescriptions more frequently over a 6-month period than those who read at or below the eighth-grade level. These findings are similar to those of the NAAL, in which 39% of surveyed high school graduates had only basic and 13% had below basic reading skills.
In a related study, Muir and colleagues7 assessed the relationship between health literacy and vision-related quality of life using the National Eye Institute's 25-item Vision Function Questionnaire. The univariate analysis showed a relationship with worse visual acuity and visual field score; thus, patients who lost vision from glaucoma had a lower vision-related quality of life. On the other hand, health literacy was only loosely associated in the univariate analysis and unrelated in the multivariate analysis. There was an association, however, with increased dependency. This loss of autonomy can result from both poor vision and needing support to administer eye drops.
Juzych and associates8 looked at 204 glaucoma patients at the Kresge Eye Institute in Detroit. On the Test of Functional Health Literacy in Adults, 50% had poor functional health literacy. This group had a lower income and educational level than the higher-literacy group. They also exhibited lower compliance with prescribed medical therapy, had a poorer understanding of glaucoma, and missed more appointments. As a result, they experienced worse visual field loss on presentation and worse field loss on follow-up examinations.
The populations at highest risk for glaucoma in the United States are African Americans and Hispanics. Based on the aforementioned surveys, these populations also have low health literacy. Improving communication with patients is essential to addressing health disparities. The process starts with the physician.
HOW TO HELP
The American Medical Association's publication Health
Literacy and Patient Safety: Help Patients Understand3 suggests
six steps physicians can take to improve interpersonal
communication with patients:
1. Slow down. Communication can be improved by
speaking slowly and by spending a small amount of additional
time with each patient.
2. Use plain, nonmedical language.
3. Show or draw pictures. Visual images can improve
the patient's recall of information.
4. Limit the amount of information provided—and
repeat it.
5. Use the “teach-back” technique. Confirm that
patients understand by asking them to repeat back
instructions.
6. Create a shame-free environment. Encourage
questions.
Other things physicians can do is ask questions that begin with “how” or “what” and avoid closed-ended questions with yes or no answers. When talking to patients, it is advisable to organize the information so that the most important points stand out and then to write down the salient points and the eye drop medication schedule. Practitioners serving a multilingual population should have brochures available in multiple languages. Another tip is to offer assistance with the completion of forms.9,10
By doing his or her part, each physician can improve health literacy and the quality of the health care delivery system.
Eydie Miller-Ellis, MD, is a professor of clinical ophthalmology, and she is the director of the Glaucoma Service at the Scheie Eye Institute of the University of Pennsylvania Health System in Philadelphia. Dr. Miller-Ellis may be reached at (215) 662-8188; eydie.miller-ellis@uphs.upenn.edu.
