Low literacy leads to inadequate self-care, possibly adding $73 billion to the national cost of chronic illness. Clinicians can take steps to improve communication and ensure better care.
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| Michael Villaire | Gloria Mayer |
Heart disease, diabetes, obesity, arthritis and other chronic illnesses affect the quality of life of 90 million adults and account for seven of 10 deaths annually in the United States, according to the National Center for Chronic Disease Prevention and Health Promotion. Successful treatment of these conditions requires that patients or their caregivers manage the illness themselves. So when patients or caregivers do not understand how to provide care, the impact on the health care system is significant.
The literacy levels of patients and caregivers can greatly impact the quality of self-care. Researchers have found, for example, that reading ability was the single strongest predictor of practical asthma knowledge: Nearly twice as many patients who read below the third-grade level had poor inhaler technique compared with patients who read at the high-school level (89 percent versus 48 percent). (See the article by Williams et al. in the journal Chest, noted in the reference list below.)
Literacy and Health Literacy
An important distinction exists between literacy and health literacy, although they clearly overlap. Literacy, according to the National Adult Literacy Survey of 1992, is: “Using printed and written information to function in society, to achieve one’s goals, and to develop one’s knowledge and potential” (Kirsch). Possessing literacy skills, particularly with the printed word, is necessary to navigate the health care system--to understand prescription labels, package inserts, patient care instructions, insurance forms, hospital admissions records, patient history surveys, appointment slips, signs on doors and walls in health facilities, and so forth.
Health literacy, on the other hand, is not restricted to the printed word. It refers to a more focused skill set necessary for an individual to function within the health care system. Health literacy may therefore be defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Ratzan and Parker).
Limited literacy is directly associated with increased mortality in the elderly, a population disproportionately struck with chronic disease. The relationship between low literacy and poor health is well documented. Patients with low literacy skills are more likely to have poor understanding of their chronic disease, worse disease self-management skills, worse self-reported health status and a greater likelihood of hospitalization due to poor self-management skills (Sudore).
Patients’ inability to understand health care information poses a significant challenge, as the health care system as a whole pays the price. The Center on an Aging Society estimated a cost of $73 billion (in 1998 dollars) that was directly attributable to misunderstood care instructions and noncompliance.
Improving Patient Communication
Caregivers can improve communication by making some simple changes in their interactions with patients. For example, caregivers should avoid the question “do you understand?” Asking this question of someone with poor reading skills, or those with health literacy challenges, will almost invariably elicit a “yes” or nods.
Shame plays a strong role: Those with low literacy skills go to great lengths to cover up the fact that they cannot read or write--or that they read or write poorly. Two of three who cannot read have never told their spouses, and nearly one in five have never told anyone, including their health care provider (Parikh). Therefore, clinicians should communicate with patients in a way that allows them to avoid admitting they cannot read, or read well.
Physicians and nurses should use the teach-back method. This involves discussing key points in “living room language”--everyday words we use to speak to one another, without medical jargon or multiple-syllable words--and keeping the number of key messages to a minimum. Then, after each point, instead of asking, “Do you understand?” clinicians should say: “I want to make sure I’ve done a good job communicating with you. Can you tell me now, in your own words, how you are going to do X?” If there are gaps or misinterpretations, clinicians will know where communication efforts have failed. They should explain that section again, asking the question until the patient can say correctly, in his or her own words, how to perform a task or what the instructions mean.
Have your printed materials reviewed by a literacy expert to ensure they are at a fifth-grade reading level. Also consider the design: The way words are displayed on a page has a great impact on whether patients or caregivers read the material (Doak). A page dense with small print, no graphics and few breaks (such as subheads, paragraph indents or white space), even though it may be written at a fifth-grade level, will likely be discarded unread by a low-literate recipient. Clinicians should never assume, however, that patients will read printed education material.
Patients should be instructed to bring all their medications to an appointment, and then asked to demonstrate how they take each one. This is especially important with new medications, and to ensure that no potentially harmful interactions exist. Caregivers should watch for how the patient identifies the medication: taking a pill out of the prescription bottle and examining it, rather than reading the label, may indicate low literacy.
Learning More
Organizations such as the Institute for Healthcare Advancement, a nonprofit based in Southern California, can help caregivers and patients manage the challenges of chronic disease. The institute offers publications on this topic and hosts an annual “best practices” conference on health literacy. Greater awareness of the problem, coupled with steps to address it, can go a long way toward ensuring better self-management for patients with chronic illness.
Michael Villaire, M.S.L.M., is director of programs and operations, and Gloria Mayer, R.N., Ed.D., F.A.A.N., is president and CEO of the Institute for Healthcare Advancement, a nonprofit organization in La Habra, Calif.
The 2007 annual conference of the institute, May 3-4 in Anaheim, Calif., focuses specifically on strategies for clinicians to help those with literacy challenges better manage their chronic illnesses. The institute has also published a series of self-help health books (“What to Do for Health”) that use simple, everyday language and illustrations designed for everyone, especially people with limited reading skills. For information about the conference and publications, please visit www.iha4health.org.
Center on an Aging Society. 1999. “Low health literacy skills increase annual health care expenditures by $73 billion.” Available from http://ihcrp.georgetown.edu/agingsociety/pubhtml/healthlit.html; accessed Feb. 13, 2007.
Irwin S. Kirsch, Ann Jungeblut, Lynn Jenkins, Andrew Kolstad. 2002. Adult literacy in America: A first look at the findings of the National Adult Literacy Survey. National Center for Education Statistics, U.S. Department of Education. 3d ed.
N.S. Parikh, R.M. Parker, J.R. Nurss, D.W. Baker, M.V. Williams. 1996. “Shame and health literacy: The unspoken connection.” Patient Education and Counseling, 27(1): 33-9.
Scott C. Ratzan and Ruth M. Parker. 2000. Introduction. In C.R. Selden, M. Zorn, Scott C. Ratzan, Ruth M. Parker, eds. National Library of Medicine Current Bibliographies in Medicine: Health Literacy. NLM Pub. No. CBM 2000-1. Bethesda, Md.: National Institutes of Health, U.S. Department of Health & Human Services.
R.L. Sudore, K. Yaffe, S. Satterfield, T.B. Harris, K.M. Mehta, E.M. Simonsick, A.B. Newman, C. Rosano, R. Rooks, S.M. Rubin, H.N. Ayonayon, D. Schillinger. 2006. “Limited literacy and mortality in the elderly: The health, aging, and body composition study.” Journal of General Internal Medicine, 21(8), 806-12.
M.V. Williams, D.W. Baker, E.G. Honig, T.M. Lee, A. Nowlan. 1998. “Inadequate literacy is a barrier to asthma knowledge and self-care.” Chest, 114(4): 1008-15.
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This article first appeared in the on May 1, 2007 in HHN Magazine online site.
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