Illiteracy: 'Hidden disability' creates health care confusion -- January 2000 -- FP Report

January 2000 • Volume 6 • Number 1

Illiteracy: 'Hidden disability' creates health care confusion

BY SHARON DENT
Austin, Texas

Instructions printed on medication bottles are meaningless to almost half of your patients. More than half can’t understand a standard consent form. More than a quarter can’t read their appointment cards to know when they’re scheduled for another office visit.

In fact, only about 20 percent of adult Americans have the ability to read, understand and act on health care information, said Terry Davis, Ph.D., professor of medicine and pediatrics at the Louisiana State University Health Science Center in Shreveport, during the Conference on Patient Education Nov. 11-14 in Austin. Davis shared sobering statistics and offered suggestions for meeting the needs of illiterate patients.

She also showed video clips of patients with low reading levels, several of whom articulately discussed health issues with their physicians. Davis noted how easily patients can hide their illiteracy.

"You can’t tell by looking at those people, and, with many of them, you can’t tell by interviewing," she said. "Many patients of all literacy and socioeconomic levels won’t tell doctors when they don’t understand something."

In addition to not understanding the health information, many misunderstand it and therefore take inappropriate action.

Davis cited a study that found that one in four women who thought they knew what a mammogram was actually did not. "So, it isn’t effective to ask patients, ‘Have you had your mammogram?’ because many don’t know what you’re talking about," she said. "Some think a Pap test checks for all cancers."

Another study discovered that many patients don’t comprehend the basic terms they would hear during a discussion about colon cancer: colon, bowel, rectum, screening, blood in the stool, tumor and polyp, said Davis.

Illustrating the confusion that shrouds health care for many patients, Davis showed video clips of people with low literacy being interviewed about their medications and conditions. One man was taking 10 different medications but couldn’t read the instructions, so he just took one pill from each bottle every day. Another used his inhaler incorrectly. One patient thought "stool" meant "urine," and one very low-key patient thought his diagnosis of hypertension was strange because he wasn’t at all hyper.

Literacy impacts compliance, Davis said. One study found that 55 percent of patients reading at or below the sixth-grade level reported missing medications at least twice a week, compared with 8 percent for patients reading at or above the seventh-grade level. Patients with low literacy cited these reasons for missing medications: being confused, depressed or bothered by side effects, or wanting to cleanse their bodies.

Poor health literacy leads to longer hospital stays, ineffective use of prescriptions and misunderstanding of treatment plans, costing about $73 billion each year, said Davis.

"We need to tune in to patients’ concerns and address them to ensure compliance," she said. "Patients respond to practical advice and demonstrations."

For example, she cited a study of parents learning how to administer a liquid antibiotic. When the physician demonstrated how to draw the medicine into the syringe and then marked the syringe, 100 percent of parents administered the correct dosage, the study found.

Simplifying forms and materials alone won’t solve the problem, said Davis. You also have to simplify your spoken explanations and instructions. "People with low literacy need the most relevant and essential information without the unnecessary details," she said, offering these tips:

Slow down.

Simplify, limit the information you offer and repeat the instructions.

Show patients pictures, models and demonstrations to illustrate what you want them to do.

Listen and check for understanding by asking open-ended questions such as "How are you going to take this medication?"

Be positive and hopeful. Emphasize the benefits of compliance, such as living longer or breathing more easily.

Show respect for all patients.

"We need to understand how shameful low literacy can be," Davis said. "Many patients have never told anyone about it. It’s a hidden disability."

FP Report is published by the AAFP News Department.
Copyright © 2000 by American Academy of Family Physicians.

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