Health 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

There 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.

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.

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.

Pay close attention to how your body reacts after taking a medication and contact your doctor, pharmacist or other healthcare professional immediately if you experience any unusual symptoms.

When taking prescription medicines, there are many possible explanations for symptoms, other than a drug reaction. However, if you experience a new symptom and it began after you started taking a new medication, contact your doctor, pharmacist or other healthcare professional immediately. It is important to determine whether the reaction was drug-related and agree on next steps (i.e., should you continue or discontinue the medicine?).

Ask about the signs of overdose, so you can recognize the symptoms either in yourself or a member of the family. In the event of an overdose, you’ll want to know what to do, such as call a poison control center or other emergency number.

Using medicines properly is very important for your health. If you have any questions, contact your doctor, pharmacist, or other healthcare professional before, during, and after taking medicines.

Take your medicine only as it is prescribed and NEVER exceed the recommended dose unless instructed by your doctor or other healthcare profesisonal.

Always take your medication as instructed by your doctor, pharmacist or other healthcare professional, and never change the way you take it unless one of these healthcare professionals instructs you to do so. A medication will provide little benefit if you skip doses or stop taking it before you should, and could be harmful if you exceed the recommended dose.

Taking your medicine correctly is very important. Some medications need to be taken with meals, others on an empty stomach. Some are taken only as needed (i.e., only when you experience symptoms), others at set times.

Before starting any new medication, make sure to ask your doctor, pharmacist, or other healthcare professional how and when it should be taken. If the directions say to take the medication every three or four hours, ask if that means throughout the night as well as during the day. Should it be taken at the same time every day? Are there certain foods, drinks, other medicines or activities you should avoid while taking the medicine? What happens if you miss a dose?

Also ask if there are any precautions you should follow while taking the drug. For example, some medications may cause drowsiness, so you should not drive a car or operate heavy machinery while taking them. Other drugs may require you to stay away from certain foods or ingredients (e.g., alcohol, caffeine). If you will be traveling, find out if your medication can be used in different climates.

Find out how long it will take before your medicine starts to work and when you should begin to notice an improvement. While taking medications such as drugs that lower your cholesterol or blood pressure, you may need to undergo medical tests to show how the medicine is working. Ask how often you will need to be tested and how and when you can find out the results of these tests.

If you are a caregiver for a child or another person, you may have to remind them to take their medication or administer it to them yourself. If your child goes to school, contact the school nurse to help him/her take medicines on time and safely.

Some products offer aids that can help remind you to take your medicine on time and help you keep track of the doses you take. These aids include calendars, containers with sections for daily doses, and containers that beep when it is time for you to take your medicine. Ask your doctor, pharmacist or other healthcare professional what is available.

If you are unclear about the prescribing directions, ask your healthcare professional to explain them to you until you do understand.

Ask your doctor, pharmacist or other healthcare professional about any side effects associated with the medication and any specific recommendations about how and when to take it.

Virtually any drug will occasionally cause an unwanted reaction. A side effect is a reaction or consequence of medication or therapy that is additional to the desired effect of the medicine. Some side effects are predictable. For example, some antihistamines can cause drowsiness and many cancer therapies can cause hair loss. Side effects are listed in the U.S. Food and Drug Administration (FDA) (This link will take you to a web site to which this Privacy Policy does not apply. You are solely responsible for your interactions with such web sites.) approved labeling for the drug.

Some adverse reactions are unexpected, may be serious, and are unpredictable. Serious adverse reactions are also, in general, rare. The causes of such reactions include medication errors (e.g., overdose), or interactions between different drugs or between drugs and certain foods. Call your doctor, pharmacist, or other healthcare professional immediately if you think you’ve experienced an adverse drug reaction to your medication.

Do not be afraid to ask your doctor, pharmacist or other healthcare professionals any questions or concerns you have about your medications. They can help you anticipate and understand your medicine’s side effects and help you deal with them.

Pharmaceutical companies track adverse events and they must notify the FDA when they learn of side effects. Many pharmaceutical companies offer toll-free numbers you can call if you have questions about your medicine.

Most companies also provide information via web sites on the Internet. The types and amount of information will vary by company.

There are other sources of information you can access to get more information about your medication and possible side effects.

Package Inserts

The Package Insert (also referred to as ‘Labeling,’ ‘Prescribing Information’, or ‘PI’) is prepared by your medicine’s manufacturer for healthcare professionals who prescribe or dispense prescription medicines. PIs ordinarily follow a particular format mandated by the Food and Drug Administration. Your pharmacy should have a current package insert for any drug dispensed. If it does not, ask your pharmacist to get one for you.

Package inserts are not the same as the abbreviated safety information printouts that many pharmacies now offer with your prescription. They may also vary from the labeling information that accompanies most advertisements for prescription medicines (these are called “brief summaries”). The brief summary contains a portion of the full prescribing information. It contains information relating to side effects, warnings, precautions, and contraindications (circumstances under which your medicine should not be used) of the drug, and sometimes is written using more easily understood language.

For several prescription medicines, such as oral contraceptives and other hormone-based products, the FDA requires that manufacturers provide special materials (patient package inserts) written for consumers. The FDA has reviewed these materials. If you receive a prescription for one of these products, the patient package insert should be included. If it is not, ask your doctor, pharmacist or healthcare professional for this information.

Many package inserts can also be found in the Physician’s Desk Reference ® (often referred to as the PDR). For over 50 years, this publication has served as an annual compendium of FDA-approved labeling for many prescription drugs. Keep in mind, however, that the PDR is published only once a year, so any revisions to the package insert occurring in the interim may not appear in the version you are looking at (Note: two supplements to the PDR are published every year). Check at the very end of the package insert or the PDR entry to see when it was last updated. If you’re not sure you have the latest version, ask your doctor, pharmacist, or other healthcare professional, or contact the company.

The PDR ® Family Guide to Prescription Drugs ® is another good resource. In addition to listing each medication under its familiar brand name, as well as its generic name, the publication includes important information about side effects specifically attributed to the drug by the manufacturer. It also provides full information on standard dosage recommendations and provides advice on what to do when you miss a dose of your medication, while alerting you to the warning signs of overdose.

Check your local library or bookstore to see if they have a current version of these books. Both are also available on the Internet.

Other Sources

The Internet offers a number of sources of information about approved drugs.

While you may find a wealth of data on the Net, however, keep in mind that these sites generally do not cover all possible uses, actions, precautions, side effects, or interactions of these medicines, nor are they intended as medical advice for individual problems or for making an evaluation as to the risks and benefits of taking a particular drug. It is still best to discuss this information with your doctor, pharmacist, or other healthcare professional to find out how any medicine applies to you and your particular situation.

Tell your doctor and your pharmacist about all medications you are taking (prescription and over-the-counter), before a new prescription is written or dispensed.

You should know the names of all your medications, both prescription and nonprescription (e.g., over-the-counter medicines such as aspirin or cold and allergy remedies, as well as vitamins, herbal remedies, etc.). If you’re seeing more than one doctor make sure to inform each physician of all medications you are taking. It is important your doctors have this information because your new medication may not work well with one or more of those prescription or over-the-counter medicines. Use the Medication Record in this website to list all the prescription drugs and over-the-counter medicines you are currently taking and have taken recently, and make sure to share it with your doctor, pharmacist or other healthcare professional.

To get your list started, ask your pharmacist for a computer printout of all your medications. It’s a good idea to get all your prescriptions filled at the same pharmacy. This way, your pharmacist will have a complete record of all your prescription medicines and can crosscheck for drug interactions. He/she can also check your medication history to see what you have been prescribed for a particular condition in the past. If you have an emergency prescription or mail-order prescription filled elsewhere, bring the bottle/tube to your regular pharmacist the next time you’re in, so it can be entered into your file.

Medication Record

MEDICATIONS YOU TAKE EVERY DAY (complete for each drug)

MEDICATION NAME (Brand and/or generic name) ________________________________

PRESCRIPTION OR NONPRESCRIPTION ________________________________

If Prescription, date it was prescribed and name of prescribing doctor or other healthcare professional
______________________________________________________

DOSAGE (pill size, number of times you take it daily) ________________________________

PURPOSE (why it was prescribed or why you are taking it) ________________________________

HOW TAKEN? (with/without food, time of day) ________________________________

ANY SIDE EFFECTS? (list any side effects you’ve experienced and any action associated with these effects. For example, “stomach upset if not taken with food.”)
______________________________________________________

MEDICATIONS YOU TAKE PERIODICALLY (including medications for allergies, pain, headache, stomach upset, etc.)

MEDICATION NAME (Brand and/or generic name) ________________________________

PRESCRIPTION OR NONPRESCRIPTION ________________________________

If Prescription, date it was prescribed and name of prescribing doctor or other healthcare professional ______________________________________________________

DOSAGE (pill size, number of times you take it daily) ________________________________

PURPOSE (why was it prescribed or why are you taking it) ________________________________

HOW TAKEN? (with/without food, time of day) ________________________________

ANY SIDE EFFECTS? (list any side effects you’ve experienced and any action associated with these effects. For example, “stomach upset if not taken with food.”) ________________________________

MEDICATIONS YOU HAVE TAKEN IN THE PAST (list drugs you’ve taken with success and those you’ve had problems with)

MEDICATION NAME (Brand and/or generic name) ________________________________

PRESCRIPTION OR NONPRESCRIPTION ________________________________

WHEN TAKEN? (month/year) ________________________________

PURPOSE (why was it prescribed or why did you take it) ________________________________

DID IT WORK? ________________________________

LIST ANY SIDE EFFECTS ________________________________

LIST ANY PROBLEMS (include reason and severity of problem. For example, “had allergic reaction”)
______________________________________________________

Provide your doctor or healthcare professional with a complete medical history.  Be sure to inform him/her of anything unusual about your personal or family health history, or any changes in your diet or lifestyle, before a prescription is written. You know more about you than your doctor possibly can.

A visit to your doctor or other healthcare professional is a two-way learning experience. It’s not only a chance for you to find out how you are doing medically, but it’s also a chance for him/her to get an update on any medical and social changes that could have an impact on your health.

In addition to providing your doctor or other healthcare professional with a list of medicines you are currently taking or have taken recently, be prepared to answer questions about your medical history, including surgeries and immunizations (vaccinations). Make a list of any allergies you have and document your family history (e.g., conditions such as cardiovascular disease, diabetes, kidney disease). If you have previous medical records, have them sent, or if they are in your possession, bring them with you. Tell your doctor or other healthcare professional about changes in your day-to-day life, such as your sleeping and eating patterns (for example, are you on a low-salt, low-sugar, or any other special diet?, are you on a new shift at work?).

All these things can help the healthcare professional determine the best possible prescription for you if one is needed. Also make sure to let them know:

• Any allergies to specific medications, or if you suspect you have previously experienced an adverse or allergic drug reaction to a particular medicine. If possible, provide the brand name and generic name (also called the chemical or scientific name) of the medicine, the dosage, and any side effects you experienced. This information can be entered into your permanent record.
• If you are now or soon planning to become pregnant, or if you are currently nursing a baby. Some medications should not be taken by women intending to become pregnant, during pregnancy or while nursing.
• Any illnesses or problems for which another doctor or healthcare professional is currently treating or has recently treated you.