Promoting literacy to increase adherence

Roughly 80 million Americans navigate health care's complexities with limited health literacy skills. Learn easy steps that help patients understand what they need to do, without the need for formal literacy screening or for questions that might embarrass a patient.

When his heart failure patient kept getting hospitalized with related complications, Ben Powers, MD, worried that something wasn't quite connecting.

On the surface, the problem appeared to be nonadherence. The man struggled to keep up with his medications and his recommended diet. But Dr. Powers, an internist and assistant professor of medicine at Duke University Medical Center in Durham, N.C., suspected a more deeply rooted cause. “I had a fairly strong suspicion that literacy was part of it,” he said.

Ruth Parker FACP and Lorenzo DiFrancesco FACP members of the Emory  Grady Health Literacy Team in Atlanta examine pill bottle labels outside of Grady Hospital Photo courtesy of Kara L Jacobson MPH
Ruth Parker, FACP, and Lorenzo DiFrancesco, FACP, members of the Emory @ Grady Health Literacy Team in Atlanta, examine pill bottle labels outside of Grady Hospital. Photo courtesy of Kara L. Jacobson, MPH

A few questions confirmed Dr. Powers' instinct. Yes, the patient acknowledged, his wife did assist him with looking at medical information. And when the patient was asked to rate his own reading ability? “He said something to the effect of, ‘Not too good anymore,’” Dr. Powers recalled.

From then on, Dr. Powers made an effort to involve the man's family in treatment discussions and asked the patient and family to restate the plan at each encounter to ensure comprehension, a technique known as “teach-back” (more on that later). He also took other steps, such as enrolling the patient in a heart failure disease management program, to provide better support.

Roughly 80 million American adults navigate the medical world's complexities with limited health literacy skills, according to a recent report by the Agency for Healthcare Research and Quality. The report, published earlier this year, joins an accumulating stack of findings and related studies highlighting the comprehension gap that physicians need to and too frequently fail to adequately bridge.

Health literacy, according to the influential 2004 Institute of Medicine report on the subject, describes “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” It has been designated among two dozen priority objectives recommended by the Institute for inclusion in Healthy People 2020, a federal plan for improving American health.

Also this year, the American College of Obstetricians and Gynecologists spotlighted health literacy difficulties in a committee opinion, stressing that their physicians need to strive harder to ensure patient comprehension. Meanwhile, a litany of studies continues to document the risks of poor health literacy, from scrambling of medication regimens to a higher likelihood of death in heart failure patients.

To some extent, understanding medical treatment involves the comprehension of a new language, one with its own set of concepts, jargon and even statistics. In addition, influences such as culture and life experiences also can shape how patients perceive and process vital health information, said Yolanda Partida, MSW, DPA, who directs Hablamos Juntos (We Speak Together), an organization that develops practical solutions to language barriers in health care.

As a doctor, “part of what you're trying to do is make sure the message that you intended to give is the message that was received,” she said.

Ruth Parker, FACP, a member of the committee that co-authored the Institute of Medicine's health literacy definition, made a similar point, saying the field has evolved beyond simply defining the problem and its impact on patient health. Now the challenge is how best to teach doctors and other health care providers to talk more clearly to all of their patients, not just those with health literacy difficulties, said Dr. Parker, a professor of medicine and public health at Emory University School of Medicine in Atlanta.

If doctors can't communicate what patients need to do, she says, “in ways that patients can understand and act on, then we aren't health literate.”

Literacy fallout

While all patients can benefit from clearer communication, patients with chronic health conditions may be particularly stymied by low literacy, said Pamela Peterson, MD, MSPH, assistant professor of medicine in the division of cardiology at Denver Health Medical Center in Colorado. Diseases like diabetes or heart failure require a lot of ongoing patient involvement to keep up with medication, diet and other treatment regimens, she said.

In a study published in April in the Journal of the American Medical Association (2011;305:1695-701), Dr. Peterson found that heart failure patients with low health literacy faced a higher risk of overall mortality. Of 1,494 patients who were followed for a median of 1.2 years, 17.5% were identified to have low health literacy. A higher proportion of that group, 17.6% compared with 6.3% among those with adequate literacy, died during the follow-up period.

It's unclear precisely why that is, Dr. Peterson said. One possibility, along with the inherent challenges of managing a chronic disease, is that patients with low health literacy may be less likely to get involved with medical decisions. “I think patients who don't always understand are a little more likely to accept what they are told and nod and say ‘yes,’ and not engage in the process,” she said.

Without assistance, patients with limited health literacy also are more likely to struggle with juggling multiple medications, said Michael Wolf, PhD, MPH, associate professor of medicine and learning sciences at Northwestern University's Feinberg School of Medicine in Chicago.

In a study published in February in Archives of Internal Medicine (2011;171:300-5), Dr. Wolf and his fellow researchers gave 464 adults seven drugs (with various dosing regimens) and 24 bins with which to demonstrate how they would divvy them up over the course of a day. Fifteen percent achieved the optimal dosing, consolidating the dose schedule to four or fewer times daily. Nearly one-third, 29.3%, scattered the doses over seven or more times across the 24-hour period.

Those with low health literacy were more likely to opt for more frequent doses, although even patients with adequate health literacy didn't always do well. For example, when two medications described the same dosing regimen in two different ways, every 12 hours versus twice daily, only 21% of all patients optimized their schedules by taking both medications at the same time.

A spot assessment

For time-pressed physicians, conducting a detailed health literacy assessment is infeasible, even when difficulties are suspected, Dr. Peterson said. One assessment tool, for example, took her 20 minutes to complete with a patient. Also, detailed assessments risk embarrassing patients, who are more likely to realize the reason for the evaluation as it drags on, she said.

In her heart failure study, Dr. Peterson asked patients to answer only three questions, ones that had been validated by prior studies, via a mailed survey. (Non-responders were called and as many as 10 follow-up attempts were made in all.) The questions were:

  1. 1. How often do you have someone help you read hospital materials?
  2. 2. How often do you have problems learning about your medical condition because of difficulty reading hospital materials?
  3. 3. How confident are you filling out forms by yourself?

Dr. Powers, who conducted a review of 10 studies evaluating brief health literacy assessments, also found several single-item questions to be moderately effective. His findings, published in July 2010 in the Journal of the American Medical Association (2010; 304:76-84), determined that patients responded best to the following question: How confident are you filling out medical forms by yourself?

Perhaps that question is effective because it's a bit indirect, he said. “It's a potentially less embarrassing way to ask patients about this.”

Dr. Powers said that he's more likely to delve into patients' health literacy if their education is limited or if they appear to be struggling with a complex or chronic illness. “Sometimes it's in response to prior miscommunication, regardless of their education levels,” he said.

But doctors shouldn't presume that they can accurately guess at their patients' health literacy, Dr. Powers said, pointing to a 2007 study as one illustration. In that study, published in Patient Education and Counseling (2007;66:119-22), the primary care doctors involved not only consistently overrated their patients' health literacy, but missed the mark by a wider margin with non-white patients. They overestimated the health literacy level by 11% in white non-Hispanic patients compared with 54% in African-Americans and 36% in all other racial and ethnic groups combined.

What doctors can do

Routine screening isn't the best solution to the health literacy problem, Dr. Parker said. Instead, physicians should pay closer attention with all patients to the words they use, the points they want to make and how the patient responds.

Physicians should use a lot of active verbs, stating what steps they want patients to take, she said. They should also limit and emphasize the central ideas they want to convey in a particular patient visit. Physicians should make sure the entire staff follows the same approach, including nurses and educators, among others, she said.

“This concept of dumbing down is not something that we're hearing is a problem for patients,” she said. “We hear really very much the opposite. That it's very hard in a limited [physician] encounter to walk out of an office and know exactly what you need to be doing.”

To verify patient understanding, physicians describe using the teach-back approach, asking patients to rephrase what they've just heard in their own words. “You want to stop them,” Dr. Peterson advised, “and say, ‘Tell me what I just told you.’”

Don't just ask patients if they are taking prescribed medications, Dr. Wolf said. Find out how and when they are taking the drugs. If those doses are scattered across more than four times daily, help them work out a schedule that's more feasible, he said.

More subtle clues

Sometimes miscomprehension clues can be subtle, particularly in patients with limited English efficiency who may be reluctant to fess up, Ms. Partida said.

They are “nodding and acting like they are getting it,” she said, describing an office visit scenario. “But they still have this puzzled look. Then they walk away and say, ‘OK,’ and you're off the hook. Because they've let you off of the hook.”

Giving the patient a translated handout may not help, she said. Handouts may reflect generalized information and may not reflect the nuances a doctor is trying to convey to the patient in front of him or her.

Ms. Partida continued that while translators work with written materials to create equivalents in a second language, the text is static and often generalized for an imagined group of intended readers. Unlike translators, interpreters tailor an interpretation to a specific person and his or her circumstances. They also have the opportunity to validate intended meaning by asking the doctor or the patient to confirm what they mean or fill in gaps so that intended meaning is clear.

Other times, the literacy gap may not be rooted in the words themselves, but in how they are perceived, Ms. Partida said: A physician might advise a patient to avoid the sun while taking a medication, but a farm worker who makes his living out in the sun might flatly say, “I don't know how I can do that,” without explaining why.

It's up to the doctor not to write such patients off as unable to comprehend or non-compliant, but instead to try to decipher the reasons behind their responses, Ms. Partida stressed. Otherwise, she said, “You cannot understand them in a way that enables you to treat them.”