Low Health Literacy
Inadequate Health Literacy: A Barrier to Patient Care
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The primary care office visit should be a learning exchange between patients and their healthcare providers. Unfortunately, more than one-third of your patients may not understand much of the information you discuss. This lack of basic “health literacy” can lead to medication errors, missed appointments, and an inability to navigate the healthcare system. Learn how to identify these patients and to develop strategies leading to more productive clinical outcomes.
Defining the Problem
Health literacy, as defined in a 2004 report by the Institute of Medicine (IOM),[1] is the “ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.” At a more granular level, the American Medical Association (AMA) Council on Scientific Affairs has defined “functional” health literacy as the “ability to read and comprehend prescription bottles, appointment slips, and the other essential health-related materials required to successfully function as a patient.”[2] In addition, the IOM has also included numeracy—the ability to calculate nutrition labels or to determine proper dosage and timing of medications—in its definition of health literacy.[1]
According to the IOM report, nearly half of all adult Americans—more than 90 million—have some difficulty understanding and acting upon healthcare information,[1] with 36% unable to understand patient education handouts or follow written instructions for taking a new medication.[1] And furthermore, only 13% of adults have proficient health literacy, according to the 2003 National Assessment of Adult Literacy (NAAL).[3] The IOM reports that overall, health literacy is estimated to contribute $50 to $73 billion to the annual cost of healthcare in this country.[1] The adverse health outcomes of low health literacy translate into increased costs for the healthcare system. In one small study, the average annual healthcare costs for all Medicaid enrollees in one state was $2891 per enrollee, but the annual cost for enrollees with limited literacy skills averaged $10,688.[4] Another study of Medicare enrollees in sites around the country found higher costs for emergency room and inpatient care for people with limited health literacy.[5]
Who are the most vulnerable?
Low health literacy affects people of any race, ethnicity, income level, and geographic location. Of the 90 million estimated to have problems understanding health information, just 15% were born outside the country, and only 5% describe themselves as having a learning disability.[1] In fact, the majority of adults with poor (basic) health literacy are white native-born Americans.[3,6] Poor health literacy is not necessarily limited to lower income patients; one study of affluent professionals living in a geriatric retirement community found that 30% scored poorly on a test of functional literacy in healthcare situations.[7] These patients may be the most difficult to identify, as they generally have developed a range of coping skills to hide their difficulties from family, business colleagues, and their healthcare providers (Box 1).[8]
However, the IOM report finds that the problem continues to be the greatest among older people, those with limited education and those with limited proficiency in English.[1,3] Other factors associated with lower literacy include living in the South or Northeast (rather than the West and Midwest), incarceration, and income status classified as poor or near poor.[1,3]
Both the National Center for Education Statistics and the Center for Health Care Strategies report that a disproportionate number of minorities and immigrants are estimated to have health literacy problems, including 50% of Hispanics, 40% of African Americans, and 33% of Asians.[3,9] Health literacy also seems to affect women more than men, possibly because women interact more with the healthcare system.[3,9]
Why is health literacy so important?
Today’s patients are asked to perform more complex self-care, have less face-to-face time with clinicians/providers, and are increasingly seen as active consumers rather than passive recipients of healthcare. However, data from the National Women’s Health Report[10] suggest that when compared to their peers with average health literacy skills, people with poor health literacy skills
• Are more likely to report poor health status
• Are twice as likely to be hospitalized
• Remain in the hospital more days per each admission
• Have 1 more outpatient visit per year
• Have more difficulty using metered inhalers
• Have worse HbA1c levels
• Are more likely to make medication errors
• Are less likely to comply with recommended treatment
For example, studies of women with low health literacy show that significantly fewer are likely to breastfeed their infants or to have regularly scheduled Pap smears and mammograms.[10] Other studies find that people with low health literacy are hospitalized more, have more difficulties using metered dose inhalers for asthma and other lung conditions,[11] and have higher HbAlc levels[12] compared to patients with higher literacy levels. In a study of 114 patients with diabetes, only 50% of those with inadequate health literacy knew the symptoms of hypoglycemia compared to 94% of those with adequate health literacy.[13] Research also suggests that people with low health literacy make more medication or treatment errors[14] and are less likely to comply with recommended treatments; many researchers believe that low health literacy is a primary reason why only about half of all patients take prescribed medications as indicated (Box 2).[14] And according to one study of Medicare patients, 48% did not understand the written instructions to “take medicine every 6 hours,” 68% could not interpret a blood sugar value, 27% could not identify their next appointment and did not understand “take medicine on an empty stomach” when instructions were written at a 4th grade level, and 100% could not understand a statement of Medicare rights written at a 10th grade level.[15]

Patients with inadequate health literacy also face other obstacles when accessing and using the healthcare system. Literacy problems can inhibit patients’ abilities to attend appointments because they may not be able to register for health insurance or follow directions to the clinician’s office.[14] Once at the office, they may not be able to complete forms proficiently,[14] may be embarrassed to ask for assistance in filling out forms, may leave with unanswered questions, or may sign a document they have not understood. Many patients complain that their healthcare clinician did not explain their medical condition in words they could understand. Once the appointment is over, patients with inadequate health literacy may not know when to return or how to follow up on the visit. As mentioned, the majority of patients with literacy issues are unable to follow the prescription directions.[16]
Under normal circumstances, people wishing to live a healthy lifestyle face many choices and challenges, such as choosing whether to eat a balanced diet, engage in physical activity, or avoid tobacco. But according to health literacy experts, making the right choice can often be very confusing for people with deficits in health literacy, particularly if they lack the skills to do basic things such as interpreting food package labels, reading health education materials, completing a gym contract or insurance forms, or trying to understand directions on prescriptions and other medicines.[17]
What You Can Do
Assessing Health Literacy
There are several simple tools you can use to assess your patients’ health literacy. Some clinicians find it helpful to add a question about literacy skills to the social history. After asking about occupation and education, they add, “Are you comfortable with how well you read?” or “What is the best way for you to learn new things?” And although perhaps more difficult to talk about, 2 other questions have been statistically validated as indicators of limited health literacy skills—“How often do you require help when you read written material from your doctor or pharmacist?” and “How confident are you filling out medical forms by yourself?”[18-20]
Another suggested method for identifying patients who might have limited health literacy skills is the “brownbag medication review.” At the time an appointment is made, ask the patient to bring in all medications (prescription and over-the-counter medications, herbal supplements, etc). When the patient comes to the office, the clinician or medical assistant can ask the patient to name each medication and explain what it is for and how it is taken. When responding to questions about how to take the medication, the patient may have memorized instructions such as “take 1 pill 3 times per day.” However, by asking questions such as “When was the last time you took 1 of these pills?” and “When was the time before that?” the patient’s confusion may become apparent.
Several assessment tools are available to help measure health literacy and assess patients’ recognition of healthcare terms and patients’ ability to interpret written health-related material. The Rapid Estimate of Adult Literacy in Medicine (REALM) is the quickest of these, taking 2 to 3 minutes to complete, and can be administered by a nurse or other staff member.[21] The REALM involves patients reading aloud a list of 66 medical words that are arranged in an increasing order of difficulty; the score is calculated by awarding 1 point for each correctly pronounced word and 0 points for each mispronounced or skipped word. A score of 59 or less indicates low literacy; a score of at least 60 indicates adequate health literacy. An abridged version of the REALM is available at the button below. The Test of Functional Health Literacy in Adults provides a more thorough picture of the patient’s ability to comprehend health material, but it is more time consuming and less practical.
Helping Patients Navigate the Medical Encounter
Studies continue to show that effective communication with patients has a beneficial effect on medical outcomes. These benefits include lower rates of anxiety, pain, and psychological distress, and higher rates of compliance and symptom resolution.[22] As well, patients’ adherence to therapy is heavily influenced by communication style. Specifically, clear and concise instructions delivered to patients by clinicians the patients trust are associated with improved rates of adherence.[23]
General consensus exists among health literacy and communication experts that there are 6 basic methods for improving communication with patients who have low health literacy (Box 3).[24,25] In general, try and speak slowly and clearly and keep language free of medical jargon, such as “period” rather than “menses,” or “poisonous” rather than “toxic.” Talking too quickly reduces the chance that patients will understand what is being said, so it’s important that healthcare providers take the time and ask their patients to repeat the instructions or otherwise demonstrate their understanding. Although clinicians frequently believe they speak to patients in layman’s terms, patients and nurses do not perceive this.[26] Not surprisingly, patients—especially those with limited health literacy—commonly report that clinicians do not adequately explain illness or treatments in understandable terms.[24]
The readability of consent forms and patient education handouts has received more attention than perhaps any other health literacy issue.[27] Studies in a variety of healthcare settings have shown that there is a mismatch between patients’ reading skills and the reading skills needed to comprehend the consent forms and handouts they are given.[27,28] Indeed, most written materials intended for patients are written at a difficulty level that exceeds the reading skills of average Americans. The effectiveness of most written materials can be enhanced if you read the material aloud and highlight, underline, circle, or number key points for the patient to remember. Drawing simple supplemental pictures and writing out simple steps and directions for individual patients can also be helpful.
The “teach-back” technique is an effective method for ensuring that patients understand what you have told them. It involves asking patients to explain or demonstrate what they have been told. For example, you can say, “Please show me how you will use the asthma inhaler, so I can be sure I gave you clear instructions.” If patients cannot explain or demonstrate what they should do, you should try again to ensure that patients learn what they need to know. The teach-back technique should replace the more common practice of simply asking a patient, “Do you understand what I have told you?” Experience shows that patients often answer “yes” to such questions, even when they understand nothing.
Any patient visit is a teaching moment. The goal of the visit is to ensure that patients provide you with the information you need to formulate a treatment plan, and that patients have all the information needed to execute this treatment plan. If your patients can answer all of the questions listed in Box 4 when they leave your office, you’ve done a good job.

Resources
To help educate clinicians on health literacy, the American Medical Association’s Foundation has launched a national initiative. This free initiative provides toolkits, patient safety monographs, reports, a listservice, and other valuable information.
US Department of Health & Human Services: Quick Guide to Health Literacy
US Department of Health & Human Services: Health Literacy Improvement
Pfizer Clear Health Communication Initiative: Physicians/Providers
Jill Shuman, MS, ELS
Published on April 5, 2010
References
- Committee on Health Literacy, Nielsen-Bohlman L, Panzer AM, Kindig DA, eds. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press; 2004.
- Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Health literacy: report of the Council on Scientific Affairs. JAMA. 1999;281(6):552-557.
- Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America’s Adults: Results from the 2003 National Assessment of Adult Literacy. Washington, DC: National Center for Education Statistics. US Department of Eduction. (NCES 2006-483); 2006.
- Weiss BD, Palmer R. Relationship between health care costs and very low literacy skills in a medically needy and indigent Medicaid population. J Am Board Fam Pract. 2004;17(1):44-47.
- Howard DH, Gazmararian J, Parker RM. The impact of low health literacy on medical costs of Medicare managed-care enrollees. Am J Med. 2005;118(4):371-377.
- Parker RM, Ratzan SC, Lurie N. Health literacy: a policy challenge for advancing high-quality health care. Health Aff (Millwood). 2003;22(4):147-153.
- Gausman Benson J, 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(2):93-97.
- Baker DW, Parker RM, Williams MV, et al. The health care experience of patients with low literacy. Arch Fam Med. 1996;5(6):329-334.
- Potter L, Martin C. Who has health literacy problems? Center for Health Care Strategies, Inc Web site. http://www.chcs.org/usr_doc/Health_Literacy_Fact_Sheets.pdf. 2005;Fact Sheet 2;3-4.
- Women & Health Literacy. Washington DC: National Women’s Health Report. 2004;26(5):1-4.
- Williams MV, Baker DW, Honig EG, Lee TM, Nowlan A. Inadequate literacy is a barrier to asthma knowledge and self-care. Chest. 1998;114(4):1008-1015.
- Williams MV, Baker DW, Parker RM, Nurss JR. Relationship of functional health literacy to patients’ knowledge of their chronic disease. A study of patients with hypertension and diabetes. Arch Intern Med. 1998;158(2):166-172.
- Doak CC, Doak LG, Root JH. The literacy problem. In: Teaching Patients with Low Literacy Skills. 2nd ed. Philadelphia, PA: JB Lippincott Co;1996:1-10.
- Weiss BD. Health Literacy: A Manual for Clinicians. 2nd ed. Chicago, IL: American Medical Association/American Medical Association Foundation; 2007.
- Gazmararian JA, Baker DW, Williams MV, et al. Health literacy among Medicare enrollees in a managed care organization. JAMA. 1999;281(6):545-551.
- Holt GA, Dorcheus L, Hall EL, Beck D, Ellis E, Hough J. Patient interpretation of label instructions. Am Pharm. 1992;NS32(3):58-62.
- Sherow S, Weinberger J. A Report on Health Literacy. Philadelphia, PA: Adult Basic and Literary Education Interagency Coordinating Council; 2002.
- Berkman ND, DeWalt DA, Pignone MP, et al. Literacy and Health Outcomes. Evidence Report/Technology Assessment No 87 (Prepared by RTI International—University of North Carolina Evidence-based Practice Center under Contract No. 290-02-0016). AHRQ Publication No. 04-E007-2. Rockville, MD: Agency for Healthcare Research and Quality, January 2004. http://www.ahrq.gov/downloads/pub/evidence/pdf/literacy/literacy.pdf
- Chew LD, Bradley KA, Boyko EJ. Brief questions to identify patients with inadequate health literacy. Fam Med. 2004;36(8):588-594.
- Morris NS, MacLean CD, Chew LD, Littenberg B. The Single Item Literacy Screener: evaluation of a brief instrument to identify limited reading ability. BMC Fam Pract. 2006;7:21.
- Davis TC, Long SW, Jackson RH, et al. Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med. 1993;25(6):391-395.
- Stewart M, Brown JB, Boon H, Galajda J, Meredith L, Sangster M. Evidence on patient-doctor communication. Cancer Prev Control. 1999;3(1):25-30.
- Svensson S, Kjellgren KI, Ahlner J, Säljö R. Reasons for adherence with antihypertensive medication. Int J Cardiol. 2000;76(2-3):157-163.
- Williams MV, Davis T, Parker RM, Weiss BD. The role of health literacy in patient-physician communication. Fam Med. 2002;34(5):383-389.
- Williams MV. Recognizing and overcoming inadequate health literacy, a barrier to care. Cleve Clin J Med. 2002;69(5):415-418.
- Waitzkin H. Information giving in medical care. J Health Soc Behav. 1985;26(2):81-101.
- Davis TC, Mayeaux EJ, Fredrickson D, Bocchini JA Jr, Jackson RH, Murphy PW. Reading ability of parents compared with reading level of pediatric patient education materials. Pediatrics. 1994;93(3):460-468.
- Glazer HR, Kirk LM, Bosler FE. Patient education pamphlets about prevention, detection, and treatment of breast cancer for low literacy women. Patient Educ Couns. 1996;27(2):185-189.







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