Root cause of noncompliant patients may be low health care literacy

Patients who don’t understand cost $73 billion a year

If you have patients who appear to be noncompliant — who frequently miss appointments and seem to ignore your advice — they may be suffering from poor health literacy instead of a bad attitude. The fact is, they may not be able to read the material you gave them and don’t understand your instructions.

"My personal experience when dealing with care delivered in the hospital, the emergency room, and the urgent care center is that when dealing with patient noncompliance, it’s often because they don’t understand," says Mark Williams, MD, associate professor of emergency medicine at Emory University in Atlanta.

Poor health literacy is a pervasive problem that accounts for an estimated $73 billion a year in unnecessary doctor visits, hospitalizations, and longer hospital stays. Consider these shocking statistics from the American Medical Association Foundation and the National Adult Literacy Survey:

  • More than 90 million Americans demonstrate low health literacy.
  • The highest prevalence of low health literacy is among native-born whites.
  • More than 66% of Americans over age 60 have either inadequate or marginal literacy skills.
  • About 45% of functionally illiterate adults live in poverty.
  • Patients hide their illiteracy well. A study of adults with reading difficulty showed than 67% had never told their spouse about their problem.
  • About 21% of American adults are illiterate, and an additional 27% have difficulty with comprehension.

"Health care illiteracy is a big problem, and it’s a newly recognized problem that we need to work on to figure out what kind of interventions will be most effective," says Ruth Murphey Parker, MD, associate professor of medicine at Emory University School of Medicine and chairwoman of the AMA’s steering committee on health literacy. "The problem crosses the socioeconomic strata and affects all types of people. We also know that it’s a major problem with the elderly, who have the most health care information needs."

Health literacy is the ability to read, understand, and effectively use health information to improve health status and reduce health disparities, says Barbara A. DeBuono, MD, MPH, medical director, public health for Pfizer in New York. "Health literacy is more than just the ability to read. It means improving communication between and among providers, the health care delivery system, and the patient in an effective way so as to enhance the patients’ real understanding of and their ability to use health information effectively," DeBuono says.

Pfizer is funding seven projects this year to find out what interventions will work best to improve health literacy for culturally diverse, low income, and senior citizen patients.

Patients need to do more than just get the information you are offering. They need to know what you are saying or showing them, understand it, and act upon it, adds Scott Ratzan, MD, of the Academy for Educational Development in Washington, DC.

Forgetting normal language

"Physicians and other health care providers have a much larger vocabulary than the average person because of what they have to go through to learn. Once they’ve learned the technical language, they forget the normal language that the patients understand," Ratzan says.

Shame prevents many patients from asking questions and seeking help when they don’t understand instructions, Parker points out. "As physicians, we need to do a better job of making sure our patients understand us and create an environment that encourages questions," she adds.

Information is a two-way street, Ratzan points out. You need to make sure you are getting the proper information from the patients, as well. Patients who have a low literacy level often check "no" for everything so they don’t have to explain it, he adds.

Health illiteracy can take different forms, depending on the patient. One may not understand a consent form. Another may not understand test results or be able to fill out his or her medical history form. Others may not know what their health insurance covers or how to use a pharmacy. "Physicians and other providers need to be very sensitive to the specific health literacy of each patient. It may be a cultural difference. It may be a different language, or you may be giving the patient too much information for them to handle," DeBuono says.

Older patients with chronic illnesses require special care because of their high incidence of low health literacy and because they may process information in a different way from younger patients.

That’s why physicians need to go beyond just handing a diabetic a brochure from the American Diabetes Association, Ratzan adds. For instance, when you write prescriptions, don’t just rip them off the pad and hand them to patients. Instead, tell the patients what their condition is, what the medicine is for, how it should be taken, and what will happen if they don’t comply with the treatment plan, DeBuono says.

Tell them you want to make sure you’ve done a good job of explaining it and ask them to teach you the information. "Handing a patient a brochure without any explanation is like giving school children a book, sending them home, and telling them they’ll have a test in six weeks," Williams points out.

Health illiteracy requires re-engineering

"Health literacy isn’t just teaching people to read. It includes the providers and the system re-engineering themselves to enhance patient understanding of what to do, how to take medications, and how to follow up," DeBuono says. It’s up to everyone in a physician office — the nurse, the receptionist, the support staff, and the doctor — to work to enhance patients’ understanding of their own illnesses, DeBuono says. "Communication is absolutely critical to improve and enhance patients’ understanding of disease. If patients manage their chronic illnesses better, they get better health care," DeBuono points out.

And, in addition to improving your patients’ health, you’ll reap other benefits if you take a few minutes to make sure patients understand what you are saying. "Patients are extremely appreciative that their health care provider is willing to make sure they do understand," Williams says.