Low health literacy: Don't assume patient knows own illness, meds

Wayne Reynolds, DO, a family physician in Newport News, Va., is struggling with what is increasingly being recognized as a national problem. Patients don't know much about the medications they're on.

Dr. Reynolds has signs in his waiting room asking patients to bring in the bottles of all medications they're taking. His nurse reviews the medication history with the patient before he sees them, and then he reviews it again, often discovering that the patient is taking drugs that weren't mentioned the first time through.

If the patient has just been discharged from the hospital, determining medications often can be even more challenging. The patient might not remember what drugs were prescribed. The patient might not bring discharge instructions. The report the hospital sends to him might not arrive until after the first follow-up visit.

"[Patients] tell me they're taking a little white pill. Or they're taking a medication for their diabetes or hypertension, but they don't know the name," Dr. Reynolds said. "I can understand if they don't remember. There's so much going on at discharge. They're packing up, and they want to go home. But it's frustrating."

A study in the August Mayo Clinic Proceedings gives evidence that Dr. Reynolds' problem is common. The study found that of 43 patients discharged from a municipal teaching hospital in New York, only 18 were able to name their diagnosis, 12 were able to list their medications and six were able to name the common side effects of their medications. The authors blame this phenomenon on the time crunch to provide care: Educating the patient on what is going on could be falling by the wayside.

"We're too busy," said Eli Friedman, MD, one of the paper's authors. He's a distinguished teaching professor of medicine and chief of the renal disease division at Downstate Medical Center in Brooklyn. "And patients don't understand what we say to them about their care because we don't present it in an intelligible form."

The AMA Foundation has long been working on the issue, along with many other medical societies and government agencies, and for health literacy advocates, this small study is yet more evidence of the gap between what happens in a health care setting and what the patient understands.

"Patients don't have much of the information that most physicians assume they have," said Ruth Parker, MD, chair of the AMA Foundation's health literacy Initiative. "It's not the fault of anyone, but we've got to realize how hard it is to be a patient."

And experts suspect that similar results might have been found if the survey had been carried out in an office setting.

"I would bet that if you did the same study in the outpatient setting, the numbers would not be quite as bad -- but not as good as doctors would like," said Darren DeWalt, MD, MPH, assistant professor of internal medicine at the University of North Carolina.

The big question now challenging physicians and health literacy activists, however, is what to do about it. The Agency for Healthcare Research and Quality, along with the National Institutes of Health, is funding several studies to investigate the link between literacy and health status, and develop interventions to address the issue.

"We need to do a better job, but the devil is in the details," said Dr. Parker, a professor of medicine at Emory University School of Medicine in Atlanta. "We have a lot of work to do."

An accompanying editorial in the Mayo journal advocated assessing patient understanding as a sixth vital sign to improve patient compliance and reduce the risk of hospital readmission.

"This is a horrendous problem that costs billions of dollars because we assume naively that patients will do what I say, and it's not true," said Edward Rosenow, MD, a pulmonolgist and internist at Mayo who wrote the editorial.

Dr. Rosenow proposed several solutions, ranging from ensuring that patients and physicians agree on the treatment strategy to assessing literacy and providing education at the patient's level, which most advocates say makes a lot of sense.

"It's crazy that we would ever give information that patients couldn't read," Dr. DeWalt said.

Experts stressed, however, that it was important to differentiate between information that physicians would like patients to have and the information that patients actually need. For example, physicians say that memorizing the names of medications may be less important than being able to access this information easily.

"I always instruct my patients to make a written list," said David Barbe, MD, a family physician in Mountain Grove, Mo. "The key is to communicate effectively with the patient about their medications."

Health literacy advocates also said it could be more important for patients to know what they're supposed to do rather than naming their medications, their side effects or why they've been prescribed.

"Is it more important to know that you're on four medications or to name them?" Dr. Parker said. "We need to make sure that our patients know what they need to do to get through the day."