As doctors, we know that a fundamental part of our job is keeping our patients healthy and achieving good treatment outcomes. What we sometimes forget is how much a patient’s ability to understand us affects those goals. According to a report from the American Medical Association, poor health literacy is a stronger predictor of health than age, income, employment status, educational level or race.1 It’s not hard to see that a patient being unable to fully grasp the consequences of his disease or follow his treatment instructions will undercut the likelihood of a positive outcome.
The importance of understanding your health problem is well illustrated by diabetes, which has detrimental systemic effects as well as ocular ones. Patients who don’t really understand diabetes—what it is, how to adjust their diet to compensate for it, how to take their medications and the importance of consistent follow-up with their primary-care physician, endocrinologist and ophthalmologist—may end up suffering with diabetic retinopathy, vascular disease, hypertension, heart disease and other unfortunate consequences. And although the direct consequences of poorly managed glaucoma will probably be limited to the patient’s vision, they are no less calamitous for the individual.
Think about how often you rely on your patients’ ability to read. In my office we frequently provide written instructions for our patients. We’re making the assumption that the person can read and understand what we’ve written. Unfortunately, that’s not always a safe assumption.
For example, much of the written material found in clinics, such as consent forms and patient education literature, is written at a 10th-grade level. Studies have found that a far greater number of patients will understand written materials if they are written at no higher than an eighth-grade reading level. In fact, in some communities materials should ideally be written at a fifth-grade level, depending upon the socio-economic status of those in the community. Again, if patients understand the nature of their disease, the potential consequences of progression and your treatment plan, they’re much more likely to end up with a positive outcome.
The Impact of Understanding
Health literacy can be defined as the ability of a person to acquire and understand basic health information—the kind of information that enables an individual to follow treatment instructions and make appropriate health decisions. Obviously, basic literacy—the ability to read—is a key part of this, although it’s not the only consideration.
How widespread a problem is the inability to read? A few years ago the National Adult Literacy Survey evaluated the level of literacy in the United States. The results suggest that there are about 44 million Americans who are functionally illiterate, and an additional 50 million with marginal literacy skills.2
Is there concrete evidence that this leads to poorer outcomes? One glaucoma-related study, which included a test of the participants’ reading level, looked at pharmacy refill data.5 The hypothesis being tested was that if patients understood their disease process and doctor’s medical recommendation they’d be more likely to get their prescription filled and take the medication as recommended. The study found that prescription refill frequency was indeed related to literacy scores. The number of refills obtained by those above the ninth-grade reading level was significantly greater than those who read at or below an eighth-grade level.
A second study found that missed appointments and medication compliance were associated with lower income and education.6 The data also indicated that those with lower income or less education tended to have more disease progression. They had worse visual fields upon initial presentation, and on follow-up exams they progressed more than other patients, presumably because they didn’t understand or take ownership of their glaucoma and what they needed to do at home in order to ensure they maintained their vision.
Complicating the matter somewhat, it’s worth noting that health literacy isn‘t necessarily the same thing as being literate in the usual sense. Yes, if someone is illiterate or has difficulty reading, that will interfere with her ability to understand the complex health process. However, a person can be very literate but still not have good health literacy skills, and vice versa.
For example, I have some patients who never finished high school—in particular, some elderly people who faced a very different opportunity structure when they were growing up. They’re hard-working people. They try to understand their disease, and they do a fabulous job of taking care of themselves. They have really good health literacy.
I also have patients who are very well-educated, with graduate degrees, who research their health problem on the Internet. In some ways, being highly educated can interfere with the health-care process if it leads to self-diagnosis and self-medicating based on the patient’s own research or what friends recommend. Some of these individuals have an impression regarding what they think is wrong with them, and they question the standard recommendations; they prefer to use alternative medications instead of the treatments that have been scientifically proven to help their disease. Sometimes I have more trouble getting these individuals to do what they need to do than I have with an average patient.
Bridging the Gap
Employing some basic communication strategies can make a huge difference in how well your patients end up understanding their disease and your instructions. Here are a few suggestions (some of them taken from the American Medical Association publication Health Literacy and Patient Safety: Help Patients Understand):
• When talking to your patients, slow down. Good communication requires speaking slowly. Doing so may take a little extra time, which is tough when we’re all rushed to get through our busy days. But an additional explanation in the office can save a lot of phone calls later—not to mention problems that arise because the patient didn’t understand what you told him to do and didn’t follow your instructions.
• Use plain, non-medical language accessible to the patient. Part of this is keeping your language at a more basic level overall—e.g., an eighth- or fifth-grade reading level—but avoiding medical jargon is also key.
• Provide multilingual brochures. With the growing population of Americans not speaking English as their first language, this could make a big difference.
• Draw pictures and provide illustrations. Having a careful explanation and a visual image will do a lot to help the patient recall what you said. Sometimes when I’m explaining how I’m going to do glaucoma surgery, I draw a picture and make little comments on it. Patients often ask to keep that piece of paper so they understand and remember what will occur. I also include the name of the procedure, so the patient can go on the Internet and research it further. (Note: I do think it’s important to make sure the patient understands the basics before he starts surfing the Internet.)
• Don’t give the patient too much information at once. It takes time for a patient to process what you’re telling him—especially if you’ve made a new diagnosis. Telling someone he has glaucoma is likely to be a shock, and his ability to remember what you’re telling him will be undermined by the resulting emotions. So, give the patient information a little at a time.
• Say key things more than once, in different words. Especially for situations that arise frequently, have the information you need to communicate organized ahead of time so the most important points are emphasized. Then, repeat them, preferably in slightly different words.
• Ask the patient to repeat key points back to you. It’s not unusual for patients to insist that they understand what you’ve said; but if you ask them to explain it back to you, they can’t. Then they’ll admit that maybe they didn’t quite get it. That gives you the opportunity to write it down for them or explain it again.
• Invite questions in a shame-free environment. Some patients won’t ask questions they really should be asking because they’re embarrassed or afraid of appearing dumb. To avoid that, you have to encourage them to ask questions. You might even say, “This is a lot of information at one time, and some people have a hard time digesting all of it.” If you let them know that they’re not alone in feeling a little overwhelmed, they’ll be much more comfortable asking questions. Whatever you do, never make your patients feel embarrassed or ashamed for asking questions.
• Ask open-ended questions. When you ask the patient questions, start with “how” or “what” questions, not yes-or-no questions. If I say, “Did you take all your eye drops?” the patient will simply say, “Yes.” But if I say, “Tell me how and when you take your drops every day,” a conversation will ensue, and I can pick up on misunderstandings about their eye drop usage.
• Explain the reason for each instruction. One of the principle reasons people don’t follow instructions is that they don’t understand the reason for the instructions. Thus, they don’t see the problem with ignoring or changing those instructions.
For example, if you tell a patient to use drops three times a day, at breakfast, mid-afternoon and in the evening, but you don’t explain why that timing spread is important, the patient is likely to switch to times that are more convenient. On the other hand, if you say, “The drop works for about eight hours and then wears off, so you need to use it at breakfast, mid-afternoon and in the evening to make sure your eye is protected all day,” he’s a lot less likely to change the timing. Now he sees the reason for the timing—and the consequences of changing it.
• Write down the dosage schedule, even if you think the patient understands. Understanding and remembering are not the same thing; having a written copy helps patients remember. (In fact, this is one good thing about electronic medical records: The instructions print out automatically, and we give them to every patient.)
• Enlist the aid of smartphone apps. There are a number of apps that are designed to help individuals remember to use their medications at the correct time, such as the EyeDROPS app from Harpas International. (For more on that, see Apps for Your Patients (and Their Eyes ) in the September issue of Review.) Even some lower-income families see their smartphones as an essential part of life; I see plenty of fancy phones in my office.
Apps like this can be helpful, even for those with excellent health literacy. Anyone can get caught up in other activities during the day and forget to put in drops. When I recently took a summer weekend off to relax at the beach, every time I put money in the parking meter I set my smartphone alarm to go off 10 minutes before the meter expired. Without that aid, I’d never remember to go back and put in more quarters. It’s the same kind of problem.
Of course, many of our glaucoma patients are not interested in the latest electronics. But even if the patient doesn’t own a smartphone, a family member may. I have patients who come to their appointments with one of their adult children. Even though they don’t live in the same place, the younger family member will often say that he calls the parent when it’s time for her drops, to make sure she puts them in. If the family member has a smartphone and uses the app, it can remind him to call mom at the appropriate time.
Keeping glaucoma from depriving people of their sight involves many steps, from diagnosing the problem and choosing an appropriate treatment to getting patient cooperation and following up in a timely manner. Making sure the patient really does understand the disease, what to do about it and the consequences of failing, is a huge part of that equation. It’s up to us to make sure that all of our patients get the message.
Dr. Miller-Ellis is professor of clinical ophthalmology and director of the Glaucoma Service at the Scheie Eye Institute of the University of Pennsylvania Health System in Philadelphia.
1. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Health literacy: Report of the Council on Scientific Affairs. JAMA 1999;281:552-57.
2. Kirsch I, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Findings of the National Adult Literacy Survey. Washington DC: National Center for Education Statistics, US Department of Education; 1993.
3. Committee on Health Literacy, Institute of Medicine. Neilson-Bohlman LN, Panzer AM, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press; 2004.
4. Weiss BD. Removing Barriers to Better, Safer Care—Health Literacy and Patient Safety: Help Patients Understand. A Manual for Clinicians. 2nd ed. Chicago: American Medical Association Foundation and American Medical Association; 2007.
5. Nyur KW, Dantiago-Turla C, Stinnett SS, et al. Health literacy and adherence to glaucoma therapy. Am J Ophthalmol 2006;142;223-26.
6. Juzych MS, Randhawa S, Shukairy A, et al. Functional health literacy in patients with glaucoma in urban settings. Arch Ophthalmol 2008;126:718-24.