Imagine what it would be like to navigate the health care system if you only read English at a fifth-grade level--or not at all. The paperwork you’d be asked to fill out, such as insurance forms, would look like sheets of indecipherable code. You might get lost in hospitals and outpatient facilities because you couldn’t make sense of the signage. You wouldn’t understand the self-care instructions the doctor or nurse just gave you, because of the complex language used. You might overdose on a medicine--or not take enough--because you couldn’t read the label on the prescription bottle.
How long do you think it would take before you were dubbed “noncompliant”? Patients who have trouble understanding health information are naturally going to have difficulty complying with prescribed treatments and preventive measures. Experts have coined the term “health literacy,” defining it as the ability to comprehend and act on health information--both written and verbal. Not surprisingly, patients with low literacy tend to have poorer health outcomes than other patients. They’re also more likely to use the emergency room and have lengthier hospital stays, costing the health care system about $73 billion a year.
The most recent National Adult Literacy Survey (NALS), conducted in 1992, found that 40-44 million Americans only read at the fifth-grade level or lower. Yet most health care materials are written at a 10th-grade level or even higher. In fact, you practically need a post-graduate degree to understand living wills, informed consent forms and other complex materials.
Racial and ethnic minority patients are disproportionately affected by literacy problems, which may partially explain the many disparities in health outcomes between Americans of color and the majority population. About 50% of Hispanics, 40% of African Americans and 33% of Asians surveyed scored in the lowest level on the NALS. In comparison, only 14% to 16% of whites scored as low. This gap can be explained in part by the large number of people of color who are immigrants learning English as a second language. Minority individuals raised in low-income and poverty-level communities are also more likely to have attended lower-quality schools and tend to go to school for fewer years than whites.
Recognizing the seriousness of the problem, nurses across the country are starting to address health literacy in minority populations. Some are conducting research to determine what works best with low-literacy patients. Others are reexamining the ways they assess, educate and communicate with patients.
“Minority nurses need to wake up and do something about health literacy,” urges C. Alicia Georges, RN, EdD, FAAN, president of the National Black Nurses Foundation. “Minorities are so often adversely affected by [low] health literacy. We can’t just wait for the next guy to do it.”
A community health nurse, Georges became concerned about health literacy when she noticed that patients weren’t changing their behaviors after receiving information on hypertension and other topics.
“We give patients information and they say ‘yes, doctor,’ ‘yes, nurse.’ But nothing happens,” says Georges, who is also assistant professor and chairperson in the Department of Nursing at Lehman College, Bronx, N.Y. “We tend to shove things in patients’ hands and say, ‘Here’s the instructions.’ But we don’t go to the next step in our assessment to find out if they understand what we’re telling them.”
To learn more about the extent of the health literacy gap, Georges teamed up with Linda Burnes Bolton, RN, DrPH, FAAN, vice president and chief nursing officer at Cedars-Sinai Medical Center in Los Angeles. The two African-American nurses used a tool called the Test of Functional Health Literacy in Adults (TOFHLA) to assess health literacy levels in 145 adults in New York and Los Angeles. Confirming their suspicions, they found that African Americans scored an average of 67 out of 100 on the TOFHLA, meaning they had marginal health literacy skills.
Tests like TOFHLA have primarily been used in academic research. But it’s time for nurses to use shorter versions of these tools in clinical settings, believes Feleta Wilson, RN, PhD, associate professor at Wayne State University College of Nursing in Detroit.
“Every initial nursing assessment should include some form of reading or comprehension test,” says Wilson, an African-American nurse educator who has been researching health literacy issues for 13 years. “When a patient first comes into your health care facility, you should assess their reading ability. This will give you baseline information that you wouldn’t ordinarily have. If you learn a patient is reading below the seventh-grade level, then you know to keep information simple and plain so they can understand.”
Georges dismisses complaints that nurses don’t have time to assess literacy. “People tell us, ‘We’re understaffed, we don’t have time for this.’ But you must make time, because if the patient doesn’t understand what you tell him, he’s going to be back with the same problem and you’ll have to spend more time with him.”
In other words, spending a few minutes up front to evaluate health literacy could save health care organizations a lot of work--and money--later on. One assessment tool, the Rapid Estimate of Adult Literacy in Medicine (REALM), only takes five to 10 minutes for patients to complete, says Wilson.
Some nurses, such as Marion Broome, RN, PhD, FAAN, prefer the TOFHLA--even though it takes longer--because it measures a patient’s ability to comprehend health information, not just read it. “The TOFHLA asks patients to apply what they read,” she explains. “For instance, the test asks patients to read a prescription label and answer questions about it.” A professor and associate dean for research at the University of Alabama School of Nursing in Birmingham, Broome is currently researching the effectiveness of giving easy-to-read materials on fever management to low-literacy parents of young children.
Because the TOFHLA, which is available in English and Spanish versions, is relatively lengthy, Wilson suggests using only a portion of the test in the clinical setting. There’s also a shorter, 10- to 15-minute version available, called the S-TOFHLA. All these tools can be found in the nursing literature and via the Internet.
Nurses can’t simply rely on their instincts to identify patients with low literacy, Wilson cautions. “There’s no ‘look’ about a person who can’t read,” she says. “I’ve seen people in cutoff jeans and ragged shirts who read at the college level and I’ve seen men in Brooks Brothers suits who had poor reading skills.”
However, nurses can watch out for red flags that may signal a literacy problem. For instance, people who consistently leave their glasses at home, ask to bring forms home to fill out or ask you to explain written materials may be low-literacy patients.
“Sometimes health care providers use a different language than the rest of the world. We use a lot of high-level words that people don’t really understand, like saying ‘myocardial infarction’ instead of ‘heart attack,’” says Judi Leonard, RN, MSN, a pediatric nurse practitioner at Friends of Children Health Center in La Habra, California.
Leonard and her co-worker Maria Rivera-Klein, RN, MSN, who is president of the Orange County Chapter of the National Association of Hispanic Nurses, are intimately familiar with the problem of health literacy. The Friends of Children Health Center provides free medical and dental care to needy children whose parents are often immigrants. The two nurses offer one key piece of advice: Use plain, simple language when communicating with patients, both verbally and in writing.
“The medical culture is a whole different culture as opposed to the ‘normal people’ culture,” notes Rivera-Klein, a clinical nurse specialist in parent-child nursing. “So you have to break medical information down into something that is understandable.”
Choose simple language and shorter words, says health literacy consultant Janet Ohene-Frempong, MS, president of J O Frempong & Associates in Philadelphia and principal and founding member of The Clear Language Group. “Instead of saying ‘consult,’ say ‘ask,’” advises Ohene-Frempong, who is African American. “Instead of saying ‘determine,’ say ‘find out.’ You also need to slow down and take pauses. Talking fast is like reading in small print. It’s a blur and people can’t grasp it.”
Providing translation services for non-English-speaking patients is a vital part of culturally competent care, but you must still convert complicated medical lingo into plain, simple terms before presenting it in Spanish or another language, health literacy experts agree. “If a Spanish-speaking person can’t read Spanish very well, you won’t help them by giving them a Spanish handout,” Georges points out.
But just keeping things simple isn’t enough. Always check for understanding. Many nurses use the “teach-back” method, which involves asking patients to restate medical instructions in their own words.
“Don’t just ask ‘Do you understand?’ because people will say ‘yes.’ Don’t just ask ‘Do you have any questions?’ because people will say ‘no,’” Ohene-Frempong emphasizes. “You need to take responsibility for the teaching and say, ‘Tell me how you’re going to manage your blood pressure, tell me how you’re going to change your diet, tell me what you’re going to do about your medications.’”
Presented the wrong way, the teach-back method can come off like a pop quiz designed to “catch” the patient making an error. “You don’t want to put folks on the spot and embarrass them further,” says Wilson. “I always say to patients, ‘I just want to make sure that when you get home you’ll understand my instructions. We as health care providers need to do more to help you understand what to do.’”
Providing patient education materials, such as booklets and brochures, that are designed specifically to be easily readable can also help patients who have low literacy skills. Leonard recently gave patients an easy-to-read self-care book, What to Do When Your Child Gets Sick, published by her health center’s owner, the Institute for Healthcare Advancement. Six months after she distributed the book, 44% of families said they had used it once or twice to care for a sick child, 38% had used it three to five times and 11% had used it six or more times.
“One mother was able to help her child who had been choking on a coin after she read the book,” Leonard reports.
Why is the book so helpful? Leonard cites several reasons: It’s written at a third- to fifth-grade reading level and it includes lots of illustrations and bulleted lists. Plus, each medical problem--from fevers to broken bones--is presented in the same step-by-step format: What is it? What do I see? What can I do at home? When do I call the doctor or nurse? What else should I do?
Nurses can use a readability assessment formula to test the reading level of written materials. One of the most common ones is Flesch-Kincaid, which is available on MS Word for Windows as part of the spelling and grammar function (look under “Options”). You just type in passages from a document and it will give you the reading level. The SMOG (Simple Measure of Gobbledygook) Index is another commonly used readability formula. “Sometimes it’s difficult to look at a document and know whether it’s easy-to-read material,” says Wilson. “If you really want to be accurate, it’s best to use a readability formula.”
What grade level should you aim for? It depends on your patient population. But experts say fifth- to sixth-grade will be understandable to the majority of patients. Anything over eighth-grade level is considered difficult-to-read.
It’s not just patient education materials that need to pass the easy-reading test. In her former position as coordinator of the Diversity Program at Dana Farber Cancer Institute in Boston, Grace Clark, RN, helped identify various written materials for patients and staff that needed to be simplified. The list included patient consent forms and hospital signage.
“Health professionals have a tendency to put too much information on a sheet of paper,” says Clark, an African-American nurse who now works as an internal medicine/pediatrics staff RN at a health care center in Dorchester, Massachusetts. “Just give the facts in a simple way. For example, even I have trouble understanding the information on Medicare that’s available to patients. But we tend to hand this to people and say, ‘We’ve done the job’ when we haven’t.”
Ohene-Frempong recommends that nurses field-test patient materials to find out if they are understandable. Even an informal field test that involves running a brochure or patient discharge instructions by five patients can provide useful feedback, she says. Just be sure to pick five people that represent a cross-section of your patient population—for example, an older patient, a patient with reading problems and a young parent.
However, easy-to-read written materials alone may not be enough to solve the health literacy problem. Nurses should also consider alternatives to the written word, such as videos, audiotapes, group classes, one-on-one consultation and support groups.
“We need to avoid the dependence on print materials as the only tool for communicating with patients,” asserts Melinda S. Forthofer, PhD, an assistant professor in the Department of Community and Family Health at the University of South Florida. “We need to use written materials in combination with other strategies.”
Forthofer is principal investigator for the Florida Health Literacy Study (FHLS), which is sponsored by Pfizer Inc. and the Agency for Health Care Administration. FHLS is using a combination approach that includes group classes to improve the health outcomes of Florida Medicaid patients with type 2 diabetes or hypertension. Study participants attend a number of classes where they learn the ins and outs of managing their disease. Health educators also provide one-on-one counseling and printed materials designed to promote disease self-management.
Results from the FHLS will not be in until 2004, but anecdotal patient stories sound encouraging. One patient weighed 252 pounds at the start of the program and had a blood pressure reading of 160/90. Three months after participating in the FHLS, she had lost 20 pounds and dropped her blood pressure to 114/70.
The key to closing the health literacy gap for minority patients comes down to making patients feel empowered, Georges believes. “We need to let patients know that they have a right to ask questions about their health. They need to know it’s OK to say to a doctor or nurse, ‘I’m not going anywhere until you tell me what this means.’”
Many organizations--from federal agencies to pharmaceutical companies--are actively addressing the problem of low health literacy. Here is a sampling of Internet sites offering health literacy information and resources for nurses.
Center for Health Care Strategies, Inc. (CHCS)
CHCS sponsors many different initiatives, including health literacy resources, to improve care for low-income people with chronic illnesses and disabilities. The “Resource Center” section of its Web site contains a series of fact sheets that provide an excellent overview of various health literacy issues.
National Adult Literacy Survey (NALS)
An executive summary of the most recent (1992) NALS is available on the National Center for Education Statistics Web site. A new 2003 survey is currently in progress and includes a health literacy component. Results are expected in May 2005.
The Institute of Medicine (IOM)
The IOM, part of the National Academy of Sciences, is in the midst of a major study to define the health literacy problem. The Institute has convened a series of public meetings on the issue.
National Cancer Institute (NCI)
You’ll find the helpful guide Clear & Simple: Developing Effective Print Materials for Low-Literate Readers free of charge on the NCI’s Web site.
Harvard School of Public Health
Harvard’s Health Literacy Studies (HLS) program provides many useful resources, including classes on health literacy, an annotated bibliography on health literacy and a video called In Plain Language.
The Institute for Healthcare Advancement (IHA)
The IHA offers an annual health literacy conference, a health literacy curriculum, a series of self-care books for low-lit patients, and more.
Health & Literacy Special Collection
The National Institute for Literacy (NIFL), offers health literacy resources through its Literacy Information aNd Communication System (LINCS) project, a national online database of literacy information. LINCS’ Health & Literacy Special Collection offers an extensive list of resources relating to various aspects of health literacy.
Pfizer Inc. Health Literacy Initiative
The “Caring for Community” section of the drug company’s Web site provides information on the Pfizer Foundation Health Literacy Community Grants Program, which funds community-based interventions that improve patient outcomes and reduce health disparities. As a member of the Partnership for Clear Health Communication (see below), Pfizer also offers resources for improving communication with low-lit patients at www.pfizerhealthliteracy.com.
The Partnership for Clear Health Communication
This coalition of national organizations working together to develop health literacy solutions has a wealth of resources for health care professionals, including “Ask Me 3,” a patient education tool designed to facilitate communication between patients and care providers.