American Foundation for AIDS Research, December 2004
Kristen Kresge

The advent of the internet greatly expanded access to health information. Sites like WebMD and chat rooms dedicated to specific maladies, coupled with the barrage of pharmaceutical advertisements, are putting Americans in the driver’s seat when it comes to their health. But for millions who are considered illiterate in the US, accurate health information may remain hard to find and even harder to understand.

The US literacy rate (percent over age 15 who can read and write) is 97%, according to the Central Intelligence Agency. This rate seems high until compared to Armenia, Mongolia, or Russia, where less than 1% of the population is classified as illiterate despite rampant poverty. US adults deemed “functionally illiterate” are more likely to be poor, less educated, and less healthy than their literate peers.

Statistics for “health literacy,” though more difficult to estimate, are much worse. The Joint Committee on National Health Education Standards defines health literacy as the ability to obtain, interpret, and understand basic health information and services and to use this information to enhance health. Nearly half of the adults in this country, 90 million Americans, do not meet this standard, according to Brian Vastag’s article in the May 12, 2004 issue of the Journal of the American Medical Association.

An alarming number of people cannot interpret consent forms, prescription information, or a physician’s oral instructions, which puts them at greater risk for health problems. This incapability includes reading labels on medicine bottles and remembering appointments. A report from the Agency for Healthcare Research and Quality found that people with weak reading skills, especially those from marginalized or low-income minority communities, were also less likely to use preventive services. Low-income African Americans with poor literacy suffer disproportionately from preventable diseases, according to a study by Mehret Birru in the 2004 Journal of Medical Internet Research.

Unfortunately, communities with high health illiteracy also face a burgeoning HIV epidemic. For example, 80% of all female AIDS cases occur in African American and Hispanic women, and AIDS is now the leading cause of death in young, African American women. Therefore, confronting the intersection of health literacy and HIV is especially critical in preventing and treating this disease. “People with AIDS, just by the nature of the disease, are more likely living in poverty,” said Dr. Seth Kalichman, professor of psychology at the University of Connecticut. “And we see higher levels of illiteracy in this population.”

Kalichman, a behavioral scientist with years of experience in the HIV field, believes that understanding how medical illiteracy affects people living with HIV or AIDS begins with considering adherence to antiretroviral medications. Previous studies reported that less than 95% adherence to HIV drugs is suboptimal and allows for viral resistance. Explaining the importance of adherence is essential in doctor-patient communications, but Kalichman found that about one in four people at a community clinic had trouble understanding such instructions — a skill that directly correlates to their health. In a study of 339 HIV-infected individuals at a community clinic, those with lower health literacy had both lower CD4 counts and higher viral loads.

“We were surprised to find this,” said Kalichman. “We knew health literacy was going to be a barrier to adherence, but we didn’t know it was going to directly relate to one of the most important biological markers for HIV.”

This study also highlighted the importance of understanding the virus and its effects on the body. Patients with lower health literacy more frequently answered questions about HIV disease incorrectly. These questions included: Are HIV and AIDS the same thing? Are T cells the same thing as CD4 cells? Misunderstanding complex HIV terminology probably contributes significantly to a patient’s inability to follow a doctor’s instructions.

In a separate study, Kalichman expanded literacy to a broader spectrum of health implications. In a group of 228 HIV-positive men and women recruited from AIDS service organizations and HIV clinics, a lower health literacy score also related to misunderstanding the HIV transmission risk. Many believed that antiretrovirals could reduce the need to practice safe sex. This suggests that people living with HIV or AIDS who understand less about their health also increase their risk of transmitting the virus, according to Kalichman.

Health care workers are often surprised by how little people know about their disease. In a program to enhance health literacy at two community clinics, Gwen van Servellen, a registered nurse and professor at the University of California, Los Angeles, found the overwhelming lack of knowledge about HIV astounding. Her clinics serve a large population of Hispanic men and women, including many Mexican immigrants traveling to California for work. Although the clinics provided information in Spanish, language was not the primary barrier, warned Servellen. People with poor reading skills had problems understanding medical jargon even in their native language. One study volunteer believed that the only way to spread the hepatitis C virus required touching an infected liver. Some participants knew that wearing condoms was important but didn’t understand why having sex with several people was dangerous. “We really had our eyes opened. We found a lot of ways in which there was dangerously low health literacy,” she said.

Though many participants had a rudimentary knowledge of HIV, most did not know that adherence to medications was important. Many patients thought that taking the drugs most of the time was sufficient. They were keenly aware of interactions between recreational drugs and antiretrovirals, which for some meant skipping doses if they planned on partying. “The desired standard of adherence was completely new to them. Most did not know about resistance,” added Servellen.

In Servellen’s study, 85 patients were recruited and randomized to either a control group that received standard clinic care or an experimental group that met with health educators and nurse practitioners in sessions designed to increase their health literacy. The materials given to the experimental group included more visual components, videotapes in Spanish, and a binder of information presented at a sixth grade reading level.

Though Servellen is still analyzing the 6-month follow-up data from this study, it appears that greater reductions in viral load occurred in the experimental group. Servellen acknowledges the limitations of the study, including sample size and failure to look at certain variables. But if the difference is verified, this study would support implementing similar interventions to combat low health literacy.

After Kalichman’s earlier work, he also began pursuing ways to improve health literacy among his patients. “All of the studies were building the case for an intervention,” he said. After 2 years of developing pictographs to explain HIV medications and the urgency of adhering to the sometimes complicated dosing schedules, Kalichman pilot-tested an intervention in a small study in Atlanta involving 30 people. The study tailored all written information, including an “adherence improvement plan,” to the person’s lifestyle and addressed the specific barriers to taking medication on time. The program used sticker charts for participants to document their adherence. Kalichman’s group took clues from a study in the late 1990s in Cameroon, a unique case of researchers in the developing world informing physicians in the US.

Despite the limited size of his pilot study, Kalichman thought the approach looked promising. “It is a practical model, and nurses can play a key role. It is something that could even be presented by a volunteer,” said Kalichman. Today’s health care system limits the time a patient actually spends with a doctor, so developing a program that involves nurses is crucial. Ideally, this type of intervention would be available for patients who do not adhere to their regimens and for preparing those who aren’t yet taking antiretrovirals.

But before introducing such interventions, a doctor must identify patients who are having trouble grasping medical information. Often the stigma associated with illiteracy prevents people from asking questions or seeking help. According to Kalichman, several signs indicate that someone has difficulty reading. Always bringing someone with them on doctor visits or saying they forgot their glasses when asked to complete forms are examples.

“Doctors know when their patients have trouble reading, and they need to be more sensitive and increase their levels of awareness,” said Kalichman. “Once patients are identified, their treatments and adherence plans need to be tailored to them.”

Simple interventions like sticker charts and more graphic brochures about HIV medications are available for free. “Doctors can do this easily because the resources are already there. Pharmaceutical companies are hip to this, and they are developing more simplistic materials,” commented Kalichman. Pfizer became involved in this field by starting an HIV/AIDS literacy program aimed at strengthening existing health programs worldwide.

Another group, the Partnership for Clear Health Communication, initiated the Ask Me 3 initiative to improve doctor/patient communication. The program highlights the three pivotal questions for a patient to ask his or her health care provider: What is my main problem? What do I need to do? and, Why is it important for me to do this?

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