Nearly 50% of US citizens are either functionally illiterate or only marginally literate, and this can have a major impact on compliance with treatment.

By Pat Carroll

Conscientious respiratory care practitioners go to great lengths to give patients information about their conditions and treatment plans. From asthma to COPD to smoking cessation, pharmaceutical companies in particular provide free full-color, attractive education handouts, diaries, and tools for patients. Practitioners spend time reviewing the handouts and demonstrating proper technique for inhalers. Why then do so many patients return to the emergency department with exacerbations of chronic illness? Why is it that patients do not follow the instructions carefully laid out for them? Patients probably cannot follow those instructions.

Consider these findings:

  • 49.5% of US adults have difficulty using text to accomplish everyday tasks, such as taking the right medication at the right time.1
  • Communication breakdown is the primary root cause of the nearly 3,000 sentinel events (unexpected deaths and catastrophic injuries) reported to The Joint Commission.2
  • 75% of Americans who reported an illness lasting longer than 6 months have limited health literacy skills.1
  • Emergency department patients with inadequate health literacy skills are twice as likely to be admitted than those with adequate skills.4
  • Inadequate health literacy skills is an independent risk factor for hospital admission in seniors.5

It is critical that respiratory care practitioners pay special attention to their patients’ literacy skills, because research has shown that people with poor health literacy skills are in worse health than those with good literacy skills—regardless of age, income, employment status, education level, and ethnic or racial group.3,6 In addition, patients with poor health literacy skills are less likely to use preventive health services (such as screening) and are more likely to have trouble with activities of daily living.6 Considering that 75% of people with chronic illnesses, such as COPD and asthma, have limited health literacy, it is imperative that RCPs have the skills needed to identify and communicate effectively with these at-risk patients.

Understanding Health Literacy

In a manual for clinicians from the American Medical Association, health literacy is described as “an individual’s ability to read, understand, and use healthcare information to make effective healthcare decisions and follow instructions for treatment.”3 Health literacy expert Helen Osborne notes simply, “Health literacy happens when patients and providers each communicate in ways the other can understand.”7 Health literacy is different from reading ability because health literacy (also known as functional literacy in nonmedical settings) requires that the patient can act on what he reads by taking the right medication at the right time, by keeping appointments, by getting refills on time, and knowing when to call a practitioner when symptoms worsen. Reading ability is decoding letters and numbers; for example, being able to read from an appointment card, “Tuesday at 2:30.” Health literacy requires that the patient not only knows he has the appointment, but that he knows where it is, how he will get from his location to the place of the appointment, how much time he must allow to be at the appointment on time, and how to get home afterward.

National Adult Literacy Survey

The US Department of Education conducted a comprehensive assessment of adult Americans’ literacy skills, called the National Adult Literacy Survey (NALS).1 Literacy skills are broken down into five levels based on a 0-500 scale. Learning these ratings is important because practitioners can now search an online database at

to determine literacy levels in the community they serve so materials can be designed to meet the needs of the community in general and then individualized for each patient. Reading levels are not as important as they once were because we need to know how patients apply and act on the information they read. As individuals move up the scale, they are able to do everything at the preceding levels.

At Level 1 (22% of adults), the individual can sign his name, find an expiration date on a license, and locate one piece of information in an article that is identical to that in the question. He should be able to write one piece of information, such as age, in the appropriate place on a form. In quantitative skills, a person at this level should be able to correctly add two numbers on a bank deposit slip. (This is functional addition, adding numbers on a commonly used form, rather than on a blank sheet of paper.)

At Level 2 (27.5% of adults), the individual can discern between two pieces of information in an article to answer a question, look at a pay stub and identify a number such as net pay or number of hours worked, and find an intersection on a simple street map. In quantitative skills, a person at this level should be able to determine the difference in price between two items.

Individuals at Levels 1 and 2 cannot read a newspaper, cannot fill out applications for work or intake forms in health care, and cannot follow a written bus schedule or read a complex map; 49% of the US population is represented here.

At Level 3 (31.5% of adults), the individual can recognize basic synonyms, choose relevant information from a table or chart to answer a question without being distracted by irrelevant information, write a brief letter explaining an error on a credit card bill, and enter information in the proper place on a table (such as a peak flow diary). Quantitatively, this person can determine the length of a bus ride based on a standard bus schedule.

Individuals at Level 4 (16% of adults) can compare and contrast articles such as opinion pieces in a newspaper, answer questions based on combining background knowledge with new information provided, compare metaphors, and process multiple pieces of information at once, such as: “If you miss a 2:35 bus leaving Main and Elm Streets going to the mall, how long will you have to wait for another bus on a Saturday?” Quantitatively, this person can calculate rates (such as miles per gallon), or perform conversions (such as comparing unit prices with one product measured in pounds with another measured in ounces).

Level 5 (3% of adults) is the highest level of literacy. Individuals at this level can read complex documents and interpret information to answer questions, such as reading a jury information form and then explaining the two ways prospective jurors can be challenged, and write a paragraph that summarizes information displayed in a table or graph. In quantitative skills, the person would be able to use an advertisement on home equity loans to determine the total amount of interest paid for a given amount over the life of the loan.

Characteristics of Low Literacy Patients

Just as with many health conditions, you cannot tell which patients are likely to have low literacy skills by looking at them. When residents of an affluent retirement community were evaluated, 30% had poor health literacy (correlating to Levels 1 and 2 above).8 Similarly, education levels do not correlate to health literacy. “Year of school completed” demographics refer only to attendance, not necessarily learning; 34% of persons at Level 1, who are functionally illiterate, have completed high school with either a traditional or equivalency diploma.1

Demographically, people with low literacy skills tend to be older, have lower income, are unemployed, and did not finish high school.3,6,7 The challenge for practitioners is to discern patients with poor literacy skills—without creating a testing environment—so they can adapt instructional materials and approaches that will best provide the information in a way that the patient can understand and act on. Unfortunately, people will go to great lengths to hide their inability to read, and they have usually developed tricks that will allow them to “get along” in social and workplace settings. Unfortunately, those are not enough when it comes to managing complex health information.

Look for these red flags that warn of poor literacy skills1,3,7:

  • Registration forms are filled out incorrectly or are illegible.
  • Health questionnaires are skipped.
  • Appointments are frequently missed.
  • Repeated incidents of medication errors by the patient.
  • The patient cannot name the medications he takes, is unable to explain why the medication was prescribed, or when and how to take it; or
  • The patient has memorized instructions and can repeat them, but cannot answer questions such as when a refill is needed or when the last dose was taken.
  • Patients identify their medications by opening the bottles and looking at the pills rather than looking at the label.
  • There is lack of follow-through with referrals, imaging, and laboratory testing.
  • Patients say they are taking their medication, but objective laboratory reports do not change as expected.
  • Patients say, “Oh, I forgot my glasses,” or “I want to take this [written material] home to discuss with my wife/husband/children” rather than reviewing it with the clinician.

Empathize with the patient to give him a socially acceptable way to let you know he cannot use the text-based materials you are giving him. Ask if the print is too small, saying others have had trouble reading it. Ask if he figures things out best when he reads something or when he has pictures to follow or a video to watch. In home care, look around to see if there are newspapers, books, or magazines in the home. If the practitioner can establish a safe, nonjudgmental environment, the patient is more likely to admit his inability to read, particularly if he realizes his health is at stake. Uncovering illiteracy is the most important step to working around it to help the patient manage his health safely.

Meeting the Needs of Low Literacy Patients

Given that half the population needs help acting on written instructions, it is best to use illustrative graphics in all patient education material.3,6,7 Ideally, a well-constructed tool can get the point across with pictures even if the patient can’t read the words. Remember that the patient with poor literacy may take the pictures literally and not recognize symbols or metaphors (Figure 1). You might also want to choose simple images that you can draw on while discussing with the patient; the patient will be more likely to remember when watching the illustration drawn in front of them.7

Figure 1. Use the explanations in the table to evaluate illustrations in patient education materials from a third party, such as a publisher or pharmaceutical company. If they are too complex, don’t use them. Find an alternative, or create your own.

Pare Down, Slow Down, Involve the Patient

You might have noticed that a majority of the illustrations in Figure 1 are household rather than anatomical or pathophysiological images. Experts are increasingly recommending that practitioners do not start at the beginning—first explaining how the lungs work, then how disease affects the lungs, and then the treatment plan. That is too much information for a patient with poor literacy skills, who is easily distracted and confused by detail that is not absolutely required. Whether it is COPD, congestive heart failure, or diabetes, start at the end with only the information the patient absolutely has to know to take medications at home safely and possibly what signs or symptoms require a call to a practitioner or a visit to the emergency department.3,7 The strongest predictor of medication problems at home is low health literacy, so medications must come first. Don’t try to cover more than two key topics per visit, and avoid medical terminology3 (Figure 2).

Figure 2. The handout marked up by the clinician as he spoke with the patient. Roughly drawn clocks were added at the request of the patient, who said the clock would help him remember. Drug names are written to match the label on the prescription dispensed to the patient, and times are added in digital format, so he could match the words to the medication and the time to either digital or analog display.

Speak slowly, and involve the patient as much as possible. Practitioners don’t have a lot of time, but resist the urge to spill out all the information at once to save time. After each step, use the teach-back, show-back technique in which patients repeat instructions back to you (when they will take which medication), and demonstrate actions they will take, such as using an inhaler.3 Include family members, as appropriate, who can help reinforce instructions, help the patient troubleshoot, and coach the patient to success following the treatment plan. At the same time, be aware of cultural issues that are important to patients and their families, and ask which family members should be included or addressed first. Schedule telephone follow-up and tell the patient you will be calling to check in and see how he is doing. An unexpected call could make the patient anxious, which would impair his ability to understand what you are saying on the phone.3 This type of follow-up shows the patient that you care about his health and ability to follow the treatment plan, thus building the therapeutic relationship.

Throughout your conversations, be sure to let the patient know he is not being tested, but that you are asking him to repeat and demonstrate and talk with you to make sure you were clear in your instructions. Never leave the impression that the patient is not smart enough to catch on. If the patient is still confused about the plan or does not understand what to do, try another teaching strategy and ask the patient if he can tell you what is not clear or blocking his ability to follow the plan. If the patient does not follow through with the treatment plan because he does not understand it, that’s the practitioner’s responsibility.

Now that we have evidence that about half of Americans cannot read well enough to follow written instructions, it is our responsibility to design and choose patient education materials that will make complex instructions easier to follow with pictures and demonstrations that will best meet the needs of all of our patients and to follow up to make sure the patient is clear on what he needs to do to follow the treatment plan. This is yet another role for which respiratory care practitioners are ideally suited; a role in which they will have direct impact on achieving positive patient outcomes for respiratory diseases.


Pat Carroll is the quality management coordinator at Franciscan Home Care and Hospice Care in Meriden, Conn. For further information, contact [email protected].


  1. Kirsch I, Jungeblut A, Jenkins L, Kolstad A. Adult Literacy in America: A First Look at the Results of the National Adult Literacy Survey. Available at: Accessed June 3, 2007.
  2. The Joint Commission. Improving health literacy to protect patient safety—fact sheet. February 7, 2007. Available at: Accessed June 3, 2007.
  3. Weiss BD. Health Literacy: A Manual for Clinicians. American Medical Foundation and American Medical Association: June 2006. Available at: Accessed June 3, 2007.
  4. Baker DW, Parker RM, Williams MV, Clarke WS. Health literacy and the risk of hospital admission. J Gen Intern Med. 1998;13:791–8.
  5. Baker DW. Functional health literacy and the risk of hospital admissions among Medicare managed care enrollees. Am J Public Health. 2002;92:1278-83.
  6. Cutilli CC. Health literacy in geriatric patients: an integrative review of the literature. Orthop Nurs. 2007;26:43-8.
  7. Osborne H. Health literacy: how visuals can help tell the healthcare story. Journal of Visual Communications in Medicine. 2006;29:28-32.
  8. Gausman BJ, Forman WB. Comprehension of written health care information in an affluent geriatric retirement community: use of the test of functional health literacy. Gerontology. 2002;48:93-7.