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4/30/2004

Low Health Literacy Is High Among Americans, Studies Say

Donna Young

Abstruse language and jargon used by health care professionals creates communication barriers that obstruct a patient's clear understanding of diagnoses, medication instructions, and disease-prevention recommendations, according to two recent reports about health literacy from the Institute of Medicine (IOM) and the Agency for Healthcare Research and Quality (AHRQ).

Based on assessments of adult literacy in the United States, about 47%, or 90 million, of American adults have literacy skills that test below a high-school level and are unable to read complex texts, including many health-care-related materials, both reports noted.

IOM reviewed more than 300 studies conducted over three decades and assessed various health-related materials, including informed consent forms and medication package inserts.

People with inadequate health literacy have less knowledge about their medical conditions and treatment, poorer health, less understanding and use of preventive services, and a higher rate of hospitalization than those with marginal or adequate health literacy, IOM reported.

But IOM's health literacy panel identified only three studies that linked higher rates of hospitalizations and patients' low health literacy, said Committee Chair David A. Kindig, professor emeritus of population health sciences and codirector of public health and health policy at the University of Wisconsin School of Medicine.

"Of all the research we call for, this is an area that badly needs more work," he said at a Washington, D.C., press conference on April 8.

People with limited health literacy come from "many walks of life," the institute reported, but the problem is greater among older adults, people with limited education, and those lacking English proficiency.

But, said IOM President Harvey V. Fineberg, too often health care information is unnecessarily complicated or made deceptively difficult for consumers to understand.

For instance, he explained, pediatric dosage charts on product labels are unclear about whether a parent should use a child's weight or age to determine the dosage to be given.

Fineberg noted that most people have difficulty identifying what size of spoon to use when a label indicates the dosage as "two teaspoons."

"These are everyday problems that face Americans and we have to deal with both the ability of people to understand what they need to know and the ability of those of us in the health professions to enable people by giving information in forms that are understandable, that are comprehensible, and that can be acted upon."

Health literacy, he said, involves not only a patient's ability to read, but also an ability to interpret and use health information to his or her best benefit.

Effects of low health literacy. AHRQ Director Carolyn M. Clancy said that her agency's evidence report, based on a broad review of 684 articles and a detailed review of a subset of 73 articles, examined whether low literacy plays a role in health disparities, lower quality of care, and medical errors.

"The report concludes that people with lower-than-average reading skills have difficulty understanding directions for taking medications, as well as hospital discharge instructions," she said. "People with lower literacy skills are more likely to have difficulty understanding informed-consent forms and in comprehending their children's diagnoses and medication instructions. They are also less likely to be knowledgeable about the health effects of smoking, diabetes, asthma, AIDS, and postoperative care."

AHRQ's literature review found that "easy-to-read guides and other comprehension aids can at least improve the outcome of knowledge for both lower and higher literacy patients," Clancy added.

AHRQ is calling for more research, she said, to examine whether poor reading ability is really the cause of adverse health outcomes or whether those outcomes are markers for other problems, such as lower socioeconomic status, impaired access to care, or low trust in medical providers.

Clinicians' roles. The American Society of Health-System Pharmacists (ASHP) in 2002 adopted a professional policy position about health literacy that encourages pharmacists to seek opportunities to support research on health literacy as it relates to the appropriate use of medicines.

The policy instructs pharmacists, when communicating medication information to patients, to consider the patient's level of general literacy and health literacy.

ASHP's policy also calls for the development of educational programs for pharmacy students, residents, and practitioners for assessing the level of general literacy and health literacy of patients.

John C. Nelson, president-elect of the American Medical Association (AMA), said that his organization is "working on ways" to include patient health literacy as part of medical school curricula in the United States.

"We believe that the young physician-in-training needs to understand this from the get-go," he said. Physicians from Nelson's generation, he admitted, are only now beginning to recognize the role health literacy plays in patient care.

"It's a public health issue," he said. "Limited health literacy is a huge obstacle standing between millions of patients and the care that they need. Quality health care works better when there is a committed patient who understands and directs his or her own health care. If you can't read about it or understand it, you can't participate."

More physicians are "slowing down" when they speak with patients during office visits, Nelson said.

Health care providers should use the "teach-back" method in which a clinician asks patients to paraphrase instructions that were just explained to them, he added.

"These relatively small efforts can make a huge difference—sometimes literally between life or death," Nelson said.

Clancy said that she learned the teach-back method several years ago after observing a pharmacist who used the practice when counseling patients about medications.

"I wondered why physicians weren't doing more of that," she said.

Reconciling medications. Health-system professionals, Clancy said, should also ensure that, when a patient is discharged from a hospital, the person receives a list of medications prescribed as an inpatient, instructions about how to continue taking those medications, and clear communication about continuing or stopping any drug products the patient has at home.

"If there was ever an opportunity to make sure that there's clear understanding, and to not overestimate necessarily the understanding of the patient, it's at the time of discharge," she said.

Disease management. Patients with low health literacy who are taking multiple medications or who have chronic conditions are most at risk for not clearly understanding their medications or managing their diseases, IOM found.

More studies are needed to determine how limited health literacy affects chronic disease management, said Michael P. Pignone, of the division of general medicine and clinical epidemiology at the University of North Carolina at Chapel Hill, who helped draft AHRQ's report.

"The role of disease management is a way of changing health care systems so they can better respond to the needs of people with varying degrees of literacy," he said. "But that's not an area that's been well represented in the literature to date. In fact our findings in general are that intervention studies are not adequate at this time to help us understand why some of the disparities related to inadequate literacy are present. We're doing that work now and hopefully we can report in a couple more years."

The University of North Carolina is conducting a randomized, controlled trial of a pharmacist-led, primary-care-based disease management program for patients with diabetes, he noted.

Clinical pharmacists at the institution also provide disease management services for patients with heart failure, chronic pain, and coagulation conditions.

A social issue. Health literacy is a function of society, not a characteristic of a person, said IOM committee member Bill Smith, senior social scientist of development program services at the Academy for Educational Development.

Health content should be included in the educational system curriculum as early as elementary school.

Plain English. Kindig admitted that his committee was guilty of using technical language in the IOM report rather than plain English.

But, he argued, the report was aimed at health care professionals and not the general public.

"We could all do a better job communicating," said AMA's Nelson. "As a physician . . . I have never been able to understand an ophthalmologist. They use words I don't understand. And so we all need to communicate better."