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Here’s What Happens When People Don’t Understand Their Doctor

The growing epidemic of health illiteracy is dangerous. #projectliteracy

Image via Flickr user kinikkin reims (cc).

The young woman who doesn’t know that the antibiotics she is taking for a common infection reduce the effectiveness of her birth control pill and necessitate a second form of contraception. The elderly man who avoids going to the doctor altogether because he’s overwhelmed by unfamiliar medical terms and unexplained acronyms on the forms he must fill out at each appointment. The mother who puts her baby to bed on its stomach rather than its back, unknowingly placing her child at risk of SIDS (sudden infant death syndrome).

They are just three of the estimated 80 million people in the U.S. who have limited health literacy, making it difficult to understand basic health information—such as following hospital discharge instructions—and services. Because health literacy also comprises numeracy, people with low health literacy may have a hard time understanding mathematical concepts related to health like probability or risk of disease.

A large body of research has linked limited health literacy to a spectrum of suboptimal health outcomes, including fewer preventive services, higher levels of hospital readmission, and worse overall health.

“If a patient does not understand his or his diagnosis or the importance of prevention and treatment plans or is unable to access or navigate health care services, it is no surprise they are struggling with their health,” said James Lebret, MD, an assistant professor of medicine at New York University’s Langone Medical Center.

According to the National Assessment of Adult Literacy, more than a third of U.S. adults have difficulty with common health tasks, such as understanding what to drink or eat before a medical test or adhering to a childhood immunization schedule using a standard table. Limited health literacy disproportionately affects the elderly, the uninsured, those with lower levels of education, people from some racial minorities, and those for whom English is not their native tongue.

Only about 12 percent of U.S. adults have health literacy skills that would allow them to make more complex health-related decisions, such as finding the information required to define an unknown medical term. However, even among the proficient, health literacy can plummet in certain contexts.

“Someone whose loved one is in the hospital after having had a stroke, for example, is under an enormous amount of stress. This can have a dramatic effect on their ability to process health information or make health-related decisions,” said R.V. Rikard, a sociologist at Michigan State University in East Lansing, Michigan.

Health literacy is not restricted to only a person's ability to read and write. It also includes an understanding of preventative health, the nature and causes of disease, and healthcare system itself. People with limited health literacy are often unable to articulate their health concerns or describe their symptoms to a doctor. They may also struggle with reading and understanding medical instructions.

“There can be a big gap between what healthcare providers intend to convey and what patients understand,” said Stacy Robison, president and co-founder of Northampton, Massachusetts-based CommunicateHealth, a consulting firm specializing in health literacy.

Limited health literacy also affects people’s ability to achieve good health and well-being, one of the United Nation’s sustainable development goals, and to manage chronic diseases. A recent study, for example, found that patients with acute heart failure patients are more likely to die within two years of hospitalization if they have trouble understanding and using health information. Another recent study showed that parents with limited health literacy are less likely to choose weight-loss strategies, such as increasing physical activity or eating more fruits and vegetables, to help their children maintain a healthy weight.

Lebret says taking medication as prescribed is “an especially big challenge” among people who limited literacy, who he says are more likely to take misinterpret medication labels and understand complex instructions, such as "take on an empty stomach," "take 1 pill every 12 hours by mouth with a meal," or “medication should be taken with plenty of water.” The problem is compounded for people who commonly take several medications, such as the elderly or those managing multiple chronic conditions.

“The ability to read a label doesn’t mean that you can actually understand them or safely and effectively take the drug in the way that is intended,” Rikard noted.

Many government agencies, including the Institute of Medicine and the U.S. Department of Health and Human Services have called for broad improvements in health literacy by requesting health information and services be provided in ways that meet the needs all people. The Oklahoma Health Equity Campaign (OHEC), for example, is focusing on improving health literacy as part of its overall plan to achieve health equity throughout the state. And the Literacy Coalition of Central Texas has similarly stressed the importance of health literacy by making it a major tenant of its programming.

Still, Robison says small changes in communication style can go a long way in making health information and services understandable and accessible to all patients. She’s led a team of plain language writers, designers, usability specialists, researchers, and health educators in helping several government agencies develop materials that aim to improve health literacy, such as a mobile app to overcome communication barriers in an emergency and infographics that clearly illustrate the burden of asthma. She recommends avoiding medical jargon and breaking down information or instructions into small, concrete steps. She also recommends that all health information is presented in language that is familiar and that written materials are designed with large, easy-to-read font, small chunks of text written in plain language—Amerihealthcaritas offers a great guide—pictures, and plenty of white space.

Because there’s no way to tell a person’s health literacy level, Lebret says doctors in particular should make an effort to universally practice this this communication style in routine patient care, even though that is increasingly difficult in the smaller windows of time in which doctors are able to communicate with patients.

“We as providers must err on the side of caution and assume that all patients may have difficulty comprehending health information,” Lebret said.

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