At the start of the 21st century in one of the wealthiest and most sophisticated societies on earth, we have discovered a most unpalatable truth: approximately half of Americans have reading and computational skill deficiencies that could impede their participation and compliance in health care (see sidebar). This problem raises serious concerns about how well patients with low or marginal literacy are navigating the current health care system. Among the basic concerns:
How well do patients understand instructions on appointment slips or prescription bottles?
Can they follow directions for preparations for diagnostic tests?
Do they understand the informed consent documents they are asked to sign?
The Risks of Low Literacy Patients
Patients with low literacy are at much higher risk of errors and poorer than expected outcomes in the modern health care delivery system than they would have been 30 years ago. For example, a patient with an acute myocardial infarction 30 years ago would have been hospitalized for six weeks, surrounded by skilled professionals who took care of every need. With new medical knowledge, drugs, and treatments (as well as cost containment pressures), a similar patient today will be out of the hospital in less than a week. Today's patients are quickly on their own, with long lists of instructions, medications, appointments, and very little support from skilled professionals. We expect patients to learn to care for themselves. How much of their "compliance" problems are our responsibility for failing to properly educate and ensure their understanding and ability to carry out the needed care?
Another problematic area is the process of obtaining informed consent. The complexity and high reading level of consent forms has been well described.10,11 The legal implications of patients signing informed consent documents they do not understand is obvious. There is ample evidence in case law that health providers may be held responsible for adverse outcomes of low-literate patients who do not understand written consent forms and have not been verbally informed about the risks of medical treatments or surgical procedures.12
In a report examining the scope of the problem of health literacy, the American Medical Association's (AMA) Council on Scientific Affairs found that "limited literacy is a barrier to effective medical diagnosis and treatment."13
The AMA report stresses the importance of physicians and other health professionals increasing their awareness of the widespread incidence of low literacy and the barriers it raises throughout the health care system.
Although research instruments can help screen for levels of literacy, these may not be appropriate for use in a clinical encounter. Most people with low literacy skills are deeply ashamed and have struggled to keep their difficulties hidden. One study found that 67 percent of patients with low literacy had never even told their spouse.14
Making Efforts Toward Comprehension
Since approximately half the population will have difficulty with health care information, it makes sense to move to a more accessible approach for all patients. That means consciously leaving time in the discussion with the patient to ensure his or her understanding of the information. One recent study found that physicians assess patients' understanding of their instruction only two percent of the time. This is clearly an area with room for improvement.
The AMA report states that physicians can learn effective communication strategies, such as making their instructions interactive by having patients do, write, say, or show something to demonstrate their understanding: this is sometimes referred to as having the patient "teach back" the information. Another technique is to show a patient a pill bottle and ask "If this were your medicine, tell me how would you take it?" which provides a rough measure of health literacy and a good introduction to discussing the instructions in a meaningful way.
Most important is to create a "shame-free environment" where patients with low literacy skills feel they can ask for help.15 All staff, clinical and administrative, need to be sensitized to the prevalence of the problem and learn to take a non-judgmental, gentle approach to offering assistance.
Written materials, from forms and questionnaires through patient education brochures, can be revised to 4th to 5th grade reading level (currently most are written at 10th grade level or higher). Pictures, diagrams, videotapes help communicate where written words may fail.
Above All, Repetition
We know adult learners need repetition to remember. But in the physicians' office or health care setting, adults get information without the opportunity for repetition. We can change that.
We can arrange for office systems where nurses review and reinforce the physician's instructions before the patients leave. We can provide instructions written at a 4th grade level that are reviewed orally with the patient (including a "teach back" step). We can make telephone calls within a day or two of the visit to find out how the patient is doing in following the instructions, etc.
While we wait for more research to illuminate the causes of health illiteracy and identify the "best practices" for diminishing and compensating for it, we can do a great deal within our own environments to improve communication and give all patients their best chance at good health outcomes.
Health Care Literacy: The Numbers
In 1992, the U.S. Department of Education conducted the National Adult Literacy Survey (NALS), to examine literacy in terms of everyday functional tasks.1 Of the 26,000 American adults interviewed, 15 percent were born outside the United States; the majority with low literacy were white and native born. Among the NALS findings:
22 percent of adult Americans are functionally illiterate (they cannot read the front page of a newspaper).
Another 25 percent have difficulty with tasks involving words and numbers (they cannot read a bus schedule).
Approximately 50 percent of Americans have reading and computational skills that are inadequate for them to fully function in our modern society.
A 1995 study by Williams, et al of 2,659 public hospital patients2 found that:
26 percent could not read their appointment slips,
47 percent could not understand written directions to take medicine on an empty stomach,
60 percent did not understand the standard consent form,
21 percent could not understand instructions (for a GI series) written at the 4th grade reading level.
81 percent of English speaking patients age 60 or older had inadequate health literacy.2
A recent study of 3,260 new Medicare enrollees in a national managed care organization found that inadequate health literacy increased steadily with age, from 16 percent of those age 65–69, to 58 percent of those over age 85.3
Baker, et al found that individuals with low literacy are twice as likely to report their health as poor and twice as likely to be hospitalized.4,5
A study of Medicaid participants found that those reading at the lowest grade levels (0-2) had average annual health care costs of $13,000 compared with the average for the population studied of $3,000.6,7
The American Academy for an Aging Society estimates that excess health care costs generated by patients with inadequate health literacy (primarily from extra and longer hospitalizations) is $73 billion dollars per year.8
Among patients who had attended diabetic education classes, less than 50 percent of those with inadequate literacy knew the symptoms of hypoglycemia compared to 94 percent of the patients with adequate literacy.9
For more information on the AMA Foundation's health literacy education materials and initiatives, contact the author at 312-464-5355, or via e-mail to [email protected].
Notes & References
- Kirsch I, et al. Adult Literacy in America: A First Look at the Findings of the National Adult Literacy Survey. Washington, DC. National Center for Education Statistics, US Dept of Education, 1993.
- Williams MV, et al. Inadequate functional health literacy among patients at two public hospitals. Journal of the American Medical Association. 1995; 274:1677–82.
- Gazmarian et al. Health literacy among medicare enrollees in a managed care organization. Journal of the American Medical Association. 1999;281:545–51.
- Baker DW, et al. The relationship of patient reading ability to self-reported health and the use of health services. American Journal of Public Health. 1997;87:1027–30.
- Baker DW et al. Patient reading ability and use of health care services. Journal of General Internal Medicine. 1999 In Press.
- Weiss BD, et al. Illiteracy among Medicaid recipients and its relationship to health care costs. Journal of Health Care for the Poor and Underserved. 1994;5:99–111.
- Weiss B. Hidden problems: low literacy. In Weiss B, ed. 20 Common Problems in Primary Care. New York, NY. McGraw-Hill Book Co. 1999:498–509.
- National Academy on an Aging Society. Understanding health literacy: new estimates of the costs of inadequate health literacy. Presented at the Pfizer Conference on Health Literacy. October 7–8, 1998, Washington, DC.
- Parker RM, et al. The test of functional health literacy in adults: a new instrument for measuring patients' literacy skills. Journal of General Internal Medicine. 1995;10:537–41.
- LoVerde ME, Prochazka AV, and Byyny RL. "Research consent forms: continued unreadability and increasing length. Journal of General Internal Medicine. 1989;4:410–12.
- Grossman SA, Piantadosi S, and Covahey C. Are informed consent forms that describe clinical oncology research protocols readable by most patients and their families? Journal of Clinical Oncology. 1994;12:2211–15.
- Brandes WL, et al. Literacy health and the law. Philadelphia, PA: Health Promotion Council of Southeastern Pennsylvania, Inc. 1996.
- Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. Health literacy: report of the council on scientific affairs. Journal of the American Medical Association. 1999;281:552–57.
- Parikh NS, et al. Shame and health literacy: the unspoken connection. Patient Education and Counseling. 1996;27:33–39.
- Potter LS and Garvey DL. Facts about health literacy. Center for Health Care Strategies, Inc. 1997.