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Patient Health Literacy

Last updated on: September 12, 2021

Patient Health LiteracyHealth professionals often assume that their patients can read and write. They routinely provide patients with written information that appears on prescription bottles, and as educational pamphlets, appointment cards and consent forms. Yet a study found that patients with poor reading ability have difficulties understanding about their healthcare and may not recognize when a medication errors occurs.

Moreover, the 1992 National Adult Literacy Survey (NALS) found that 90 million adults have difficulty understanding healthcare information. Of that figure, there are an estimated 40 to 44 million Americans, or approximately one fourth of the U.S. population, who are functionally illiterate, meaning they cannot read and write well enough to meet the needs of everyday living and working. Another 50 million have marginal literacy skills. The average reading skills of all U.S. adults is between the 8th and 9th grade level. Medicaid recipients have average reading skills equivalent to the 5th grade level.

Experts define functional health literacy as not only the ability to read health information but also to understand, interpret and properly act upon this information. The ability to read and understand information on prescription bottles, patient education materials and other essential health-related materials is required for one to function as a patient. Functional health literacy may be worse than general literacy.

The NALS did not specifically assess health literacy but other studies have examined this problem in the United States. These studies have found that many patients do not have the adequate health literacy skills to function successfully in healthcare systems. One study reported that approximately 42% of hospitalized patients surveyed were unable to comprehend directions for taking a medication on an empty stomach. Other studies have shown that medical information routinely given to patient is often above their reading level.

A study of low income older adults found their reading skills were below those of the general U.S. population. It confirmed that many poor readers do not understand written materials they receive from health professionals. in fact, most low-income older adults obtain information via TV and not through printed materials, regardless of their ability to read.

Myths About Illiteracy

Patient Health LiteracyThere are several misconceptions about illiteracy. One misconception is that years of education is a good indicator of literacy level. Years of education indicate what people have been exposed to but not what reading skills they have acquired. Research has found that many adults currently read at a level three to five grades lower than the years of education completed.

A second myth is that illiterate adults are poor, immigrants, or minorities. In the United States, most are white native-born Americans and are found in every walk of life. However, on a percentage basis, more minorities and immigrants do have reading difficulties. Another misconception is that illiterate persons are dumb and learn slowly. Most individuals with low literacy skills have average IQs and function relatively well by compensating for their reading problems.

One other common myth is that people will tell you that they can’t read. Because of the strong social stigma associated with illiteracy, most people who cannot read or who have poor reading skills will attempt to conceal this problem. Table 1 summarizes some facts and figures on the literacy problem in the United States.

Table 1: Facts About Literacy and Illiteracy
The average reading level of adults in America is at the 8th and 9th grade level.
Approximately one out of five adults reads at the 5th grade level and below.
Almost two out of five older Americans (65 and over) and inner-city minorities read below the 5th grade level.
Most nonreaders have average IQs and function relatively well by compensating in other ways for the lack of reading skills.
In the United States, most nonreaders are white native-born Americans, and are found in every walk of life. On a percentage basis, more minorities and immigrants have reading problems.
Because of the strong social stigma attached to illiteracy, people will NOT tell you that they can’t read.
Years of education is NOT a good measure of literacy level. Research shows that adults currently read three to five grade levels lower than the years of education completed.

The Cost of Illiteracy

Patients with low literacy may not fully comprehend the information they receive from healthcare providers, which could contribute to noncompliance, medication errors and poor health outcomes. Although the costs of low literacy are difficult to measure due to the confounding socioeconomic factors, several studies have found that patients with low literacy skills use more healthcare services than the literate population. A study of Medicaid participants found that those who read at the lowest grade levels had higher average annual healthcare costs compared to the overall population studied.

Parker and associates followed approximately 1,000 low-income participants over a two-year period. The researchers found that patients with inadequate literacy were almost twice as likely to have been hospitalized during the previous years. This study did control for health status and other socioeconomic factors. It has been estimated that in the United States, illiteracy leads to approximately $15 billion a year in excess hospital costs alone.

Role of the Pharmacist

Pharmacists have a responsibility to provide pharmaceutical care to enhance healthcare outcomes of patients. A number of pharmacist-initiated solutions have been implemented to address the problems of low literacy. Examples of these interventions include simplifying the wording on pamphlets and prescription labels, using pictograms and improving verbal counseling.

A description of these interventions will be provided, but first, how can pharmacists identify patients who are illiterate or have low literacy skills? Illiterate adults are not easily distinguished from the literate population. Doak and associates provide the following description of patients with low literacy skills:

They have no visible signs of literacy disability – you cannot identify them by appearance or casual conversation. They may be poor or affluent, native born or immigrant, and they are found everywhere. Healthcare providers treat them by the tens of thousands every day.

Identifying patients who are illiterate may be difficult because, as mentioned earlier, many illiterate patients are ashamed of their inability to read and hide their problem. In a study at a large public hospital, 67% of the patients with functional health literacy never told their spouses about their reading problem, 53% never told their children, and 19% never disclosed their reading problem to anyone.The study found that low functional health literacy patients pretend to themselves and others that they can read and understand health information, potentially risking their own medical treatment and well-being.

Pharmacists and other healthcare providers should be aware of some of the signs that may indicate a patient has reading problems. Low literacy should be considered if there is a problem with adherence to prescribed therapies. To detect signs of literacy problems, be aware of some of the tactics patients may use to conceal their reading problem. For example, be cautious of patients who ask others to read materials for them or make excuses to avoid reading in front of others.

Many of these patients may blame their inability to read on their glasses and will give excuses such as “I don’t have my reading glasses, “or “I’ll have to take this home for my wife (husband) to see it first.” Another clue that may indicate a patient has a reading problem is if the patient does not know the name of the medication(s) he or she has taken for a long time.

One must be very careful and sensitive when approaching patients with low literacy skills. These patients may respond very defensively about any direct inquiry about their reading skills. Patients may be ashamed of their problem. One suggestion is to ask, “Many of our patients have trouble reading their prescription bottles and other materials we give them. Is this a problem for you?”

The first step in working with patients, regardless of their reading ability, is to establish a trusting and caring relationship in which the patient feels comfortable and respected. A relationship with a patient allows the pharmacists to counsel the individual at the appropriate level and address the patient’s needs and concerns. An exploratory project designed to examine how pharmacy students might learn about the healthcare needs and perspectives of low-literacy patients found that pharmacists need to develop caring relationships with their patients in order for counseling to be most effective.

Strategies in Verbal Counseling

Improve Oral Communication

Patient counseling can be used to supplement the written information provided to patients. Doak and associates provide guidelines in teaching and communicating with patients with poor reading ability in their book, Teaching Patients with Low Literacy Skills. These guidelines can be applied to medication counseling. In counseling patients, assess the patient’s knowledge or understanding of his or her medications by using open-ended questions. Ask patients to demonstrate whenever it is appropriate. Summarize the key points about the medications and instructions. Verify the patient’s understanding of the information via feedback by having patients explain to you in their own words how they will take their medication(s).

Table 2 provides some guidelines on counseling patients who are illiterate or have low literacy skills.

Table 2: Guidelines on Counseling Patients with Low Literacy Skills
1. Assess what patients already know about their conditions or risks.Ask open-ended questions such as:

  • What did your healthcare provider tell you this medication is for?
  • What did your healthcare provider tell you to expect from the medication?
  • How did your healthcare provider tell you to take the medication?
2. Get to the point quickly.Patients with low literacy skills tend to have short attention spans and lose interest rapidly.

Since most of an illiterate person’s concentration is at the beginning of the counseling session, it has been suggested that the information be provided in the following order:

What do I take?

How much do I take?

When do I take it?

What will it do for me?

What do I do if I get a side effect?

3. Tie new information into what patients already know.By associating new ideas with familiar information, this gives meaning and logic to the new information. For example, to teach patients when to take their medication, one can provide a reminder sheet that the patient marks and takes home. The sheet can have clocks on it and patients can mark the hands on the clocks for the appropriate times.
4. Partition complex instructions.A person with good reading skills can memorize large amounts of information by categorizing the materials. Patients with low literacy skills are not able to categorize materials and this makes it difficult for them to follow complex medication regimens.

Divide the instructions into a number of small logical pieces.

5. Use simple language and avoid jargon, technical vocabulary and long explanations.Try not to use words such as prophylactic and metabolize.
6. Make sentences short and precise. Use the active voice.For example: “Take your medicine before breakfast” is clearer than “Medicine should be taken before breakfast.”
7. Summarize the important points clearly.
8. Verify patient’sunderstanding via meaningful feedback from patients.Make instructions interactive and have the patient do, write, say or show something in response to the instructions. For example, “Mrs. Walters, just to make sure that I did not leave anything out, could you please tell me how you are going to take your medication?”

Have the patient demonstrate back to you when ever possible, such as with the use of inhalers.

Pharmacists often verify patient comprehension by asking, “Do you have any other questions?” This is not an effective question because a patient with low literacy skills may not know what to ask. This may be due to their lack of problem-solving skills, limited vocabulary, and frustrating or disappointing past experiences.

Other Strategies

Improve Written Information

Patients have difficulty reading small print or letters that are close together. Instructions in capital letters or italics can be difficult to read. In fact, text in all capitals is difficult to read for readers at all reading levels. Instructions on the prescription label should be clear and in lower case letters.

To ensure that the educational and written materials available in your pharmacy are designed for low-literacy patients, the National Work Group on Literacy and Health recommends that health education material should be written at the 5th grade level or lower. Allow plenty of white space on the page. Patients with low literacy skills will feel less overwhelmed or intimated by the material. If the pharmacy serves a diverse group of patients, then written materials should be available to compensate for different reading levels.

Practical guidelines for writing materials for low literacy patients include:

  • Write the way you talk and use the active voice;
  • Use common words and short sentences;
  • Provide examples for difficult words; and
  • Include interaction and review the material.

Write the way you talk and use the active voice

When you write the way you talk to someone from your target audience, your writing will have a more friendly and personal tone. A message written in the active voice is easier to read and is more likely to get the reader to take action than one written in a passive voice. For example, “Take your medicine with your meals” is better than “Medicine should be taken at mealtimes.”

Use common words and use short sentences

Use common words such as “take by mouth” instead of “orally” and “high blood pressure” instead of “hypertension.” Short words tend to be more common and are preferred. Overall, short sentences are easier to read and understand. A rule of thumb is to keep the sentence length under 15 words.

Provide examples for difficult words

Provide examples to explain complex words. Many words used in healthcare settings are uncommon. For example, in explaining how diuretics work to treat hypertension, say “diuretics get rid of extra fluids and salt in your body and lower blood pressure…like letting air out of a balloon.” “Letting air out of a balloon” is a good substitute for a difficult word.

Include interaction and review the material

There are several ways to provide interaction or stimulus questions with the written materials. One method of providing interaction is to have a short question with a blank line at the end for the patient to answer. Another method is to ask the patient a few questions after he or she has read the materials and review the important points and answer questions.

Provide Variety of Media

Provide patients with different media formats of the materials. For example, audiotapes, videotapes and visuals may be used to replace certain printed materials. Patients are able to see and hear health information. Audiotape and videotape healthcare instructions offer alternative effective approaches to reach the functionally illiterate population. For audiotapes, one can easily plan and record your own taped instructions for use with your patients. Here are a few tips for recording instructions for patients:

  • Focus on what the patient needs to know;
  • Include interaction with the listener;
  • Tell the key points at the beginning and repeat at the end; and
  • Consider using a dialogue format.

Pharmacies can designate a special area where a portable tape player and earphones are available for patients to listen to audiotapes.

For videotapes, there are a variety of tapes commercially available on most healthcare topics for patient education. In selecting videos for patients with low literacy skills, consider selecting those videos that have a run time less than eight minutes, deal with behavior, and include interaction with the viewer. The video itself cannot be the only source used to teach the patient.

Teaching involvement is required on the part of the pharmacist or other health care providers. The healthcare provider should explain the purpose of the video and the meaning of any uncommon words. After the patient has viewed the video, the health care provider should explain again the purpose of the video and discuss the key points with the patient.

Pharmacies may consider having a video library where patients can check out videos on various health topics or there may be a designated area in the pharmacy for viewing the videos. Multimedia computer based education programs are also available for patients to choose to see and hear information about a particular medical condition or illness.

Visual Presentations

Visual aids have been used to communicate health information to illiterate individuals. Our memory systems in the brain favor visual storage and we remember a message better if it is visualized rather than just reading or hearing it. Complex materials can be better understood through visual presentations. In order to provide visuals that are effective in communicating to patients with low literacy, one must understand the reading habits of poor readers.

People with low literacy often miss the purpose of the visual because their eyes wander about the page and they tend to skip over the main features. In addition, poor readers have trouble interpreting perceptual information and they interpret words literally. Doak and associates provides a few tips on using visuals to meet the needs of those with low literacy skills. These tips include the following: concentrating on the main message; reducing the amount of reading in the text; provide visual cues and interaction; and provide motivation.

An example of visual aids includes pictorial symbols which includes photographs, illustration or drawings. Visuals such as comic strips can be used to tell a story. Two important reasons to include a picture or story for health education purposes is that people remember stories better than a set of facts and using familiar characters in a familiar setting can help people talk about real problems in their lives. Visuals can be used with text to help readers better understand the information. An example is using drawings with text to explain the correct procedure in drawing up insulin. It is recommend that the visuals and the text be placed on the same pages. If the text and visuals are separated, poor readers may have trouble knowing which text applies to what part of the visuals.

Pictograms are simple pictures that represent ideas. Pictograms are graphic images that help convey health information such as precautions and warnings to patients. Pictograms are especially useful in communicating important information to patients with low literacy skills and patients for whom English is their second language. However, pictograms are intended to be used to supplement other printed or oral instructions and as a reminder to patients of the proper way to take and store their medication. Because people may have different interpretations of the pictograms, they should not be used as the only means of providing information to the patient. Also, pictograms are cultural sensitive, so one must be careful.

Research has shown that pictograms can help improve patient’s comprehension and medication adherence. Ngoh and Shepherd examined the effects of visual aids in health education for illiterate women in rural Cameroon. In the study, visual aids were used in the educational phase and were found to improve patients’ comprehension and adherence with their medications.

Another study showed that pictographs could help patients with low literacy skills remember large amounts of medical instructions for a significant period of time. The United States Pharmacopeia (USP) offers 81 pictograms that may be downloaded from its website (www.usp.org) after accepting USP’s licensing agreement. The pictograms are available gratis to professionals and patient information providers to reinforce oral or printed information.

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