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Health Literacy and Lupus

Lupus is a chronic illness that affects multiple organs and can require advanced therapies. Because it is a complex illness, people with lupus need a high level of health literacy to manage their disease.1

What is health literacy?

The Centers for Disease Control and Prevention (CDC) defines health literacy as the ability to "find, understand, and use information and services to inform health-related decisions and actions for themselves and others.” In other words, health literacy refers to a person’s ability to:2

  • Read and understand health information
  • Interpret instructions, symbols, charts, and diagrams
  • Apply health information to their own lives
  • Weigh risks and benefits
  • Make decisions and take action

Health literacy also includes numeracy, which is the ability to understand and use numbers in daily life.2

Why health literacy matters

According to the CDC, nearly 9 out of 10 adults have trouble understanding and using personal and public health information when it includes unfamiliar or complicated language. A 2020 study by United Health Group found that improving health literacy saves $25 billion a year. Improved health literacy can also prevent nearly 1 million hospital visits.3-5

But even people who read well and are comfortable with numbers can have low health literacy levels. Like most people, they may be scared or confused when faced with a serious illness. They may have trouble understanding statistics. Or they may be too embarrassed to ask for clarification. They may also have trouble weighing risks and benefits when it comes to their health.6

Health literacy is important for many tasks related to having lupus. These tasks can include:1,7

  • Understanding health-related educational material
  • Using medical tools like a thermometer, oximeter, or blood pressure monitor
  • Understanding prescription labels
  • Managing medicine doses and timing

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The lupus knowledge assessment test

According to a 2022 study, when people with lupus have limited health literacy, they report worse outcomes and more active disease. In this study, 125 people with lupus took tests related to health literacy and numeracy. They also completed the Lupus Knowledge Assessment Test (LKAT). The LKAT consists of four questions related to lab work, medicine, symptoms, and understanding diagnostic tests.1,7

One-third of the participants had limited health literacy, and one-fourth had limited health numeracy. Limited health literacy was linked to less knowledge about lupus as measured by the LKAT.1

More health literacy studies are needed

A 2020 review found that the effects of health literacy on lupus have not been studied as much as those on HIV. This was true even though each illness affects more than 1 million people. Depending on the study that the reviewers looked at, the percentage of people with lupus who had limited health literacy ranged from 8.5 percent to 48 percent. The wide range of results was likely due to the health literacy measures used.7

One study looked at how improving health literacy made it easier for people with lupus to make decisions about which medicines to take. The researchers made sure the words, phrases, and images presented were easily understood by the individuals. But follow-up research is needed to find out if improved health literacy will affect the health behavior and outcomes of people with lupus.7

Ask for clear communication from your doctor

When working with your healthcare provider, ask them to communicate clearly, including using plain language. You have the right to have your medical questions answered in a way that you will understand. Make sure the doctor you choose sees you as an equal partner in your treatment.

It may be helpful to use the teach-back method. This method involves repeating back the information your doctor has provided to make sure you understand what they said. For example, you might discuss how to prepare for an upcoming surgery by repeating your doctor’s instructions.8

You can also do a "brown bag" medicine review. For this review, you bring in all your medicine and go over what you are taking and the proper doses.7

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