Diabetes patient Cleo Viola Hayden at her Nashville home.
Photo by Dana Johnson
Literacy intervention bolsters diabetes management
Cleo Viola Hayden never wanted people to know that she couldn't read.
“I've been beat down a whole lot,” Hayden explained. “When people know your weakness, they take advantage of it. So I didn't want to tell.”
It's a weakness she shares with more than half of Tennessee adults who have inadequate reading skills, according to a March 2004 study conducted by the State of Tennessee Office of Education Accountability.
Like many with poor literacy, Hayden was good at hiding it — she would watch others, memorize what she heard, and use other visual cues to get by. Despite having a heart condition and diabetes, even Hayden's doctors didn't know she was illiterate.
But it was taking a toll on her health. Hayden told doctors she understood their directions, even when she didn't. She wasn't sure what she was supposed to do, and her sugar levels were out of control.
Hayden isn't the only one to suffer a decline in health because of low literacy. Studies have shown that those with low literacy levels and diabetes can struggle with reading prescriptions and following doctor's recommendations, have poorer knowledge of their disease, and suffer worse clinical outcomes.
“Literacy remains an important factor [for controlling diabetes] even after adjusting for other socioeconomic factors such as age, race, gender, income and education,” said Russell Rothman, M.D., assistant professor of Internal Medicine and Pediatrics. But that doesn't mean those who can't read are without hope.
In a study published in the Journal of the American Medical Association earlier this month, Rothman tested a literacy-sensitive disease management program and found that it was able to improve the outcomes for patients with low literacy.
“This study is very exciting because it confirms that literacy appears to be an important factor in influencing who will benefit from disease management intervention, and it suggests that providing interventions that address low literacy can make a difference for low-literacy patients,” Rothman said.
Rothman's research focused on patients with type 2 diabetes with poor blood sugar control. Patients in the study attended a one-hour educational session and were randomly assigned to either a control group or the intervention group. Researchers identified patients with high and low literacy levels in both groups.
While patients in the control group underwent their usual care from their primary care clinician, the intervention group received intensive diabetes management, including educational sessions, application of evidence-based treatment algorithms, and strategies to address patient barriers, including telephone reminders and transportation assistance.
“During the intervention, we addressed low literacy by providing individualized communication, focusing on select critical behaviors, decreasing the complexity of information, using concrete examples, limiting the number of topics covered in one session, avoiding jargon, and using 'teach back' to ensure comprehension,” Rothman said.
A year later, patients who received the intervention had significant improvements in blood sugar control and blood pressure control. Patients in this group with poor literacy skills actually had more improvement in blood sugar control than patients with higher literacy skills.
“We hypothesized that the low literacy patients did so well because our intervention helped these patients to better navigate our complex health care system and to better take care of themselves,” Rothman said.
Hayden said that when she received intervention, she began to feel in control of her health. But the intervention couldn't begin until her physician recognized her inability to read.
“Cleo had a hard time when I asked her what medications she was on. I would ask her to write down what medications she was taking, and she wouldn't,” said Jim Jirjis, M.D., assistant professor of Medicine, director of the Adult Primary Care Center, and Hayden's primary care physician. “It was hard to take care of her. Then my nurse told me she thought Hayden may not be able to read.”
From then on, Jirjis changed how he treated Hayden, used different strategies to help her understand her health, and referred her to diabetes nurse practitioner Kathleen Wolff, M.S.N., who provided additional support. With intervention, Hayden's health began to improve.
“I'm able to manage my diabetes much better now,” Hayden said. “I feel like I know what to do, thanks to all these beautiful people here.”
She said she also felt empowered in other aspects of her life, so much so that, at age 67, she's learning how to read through the Nashville Adult Literacy Council, a volunteer program that teaches adults how to read.
Hayden would like to improve to the point that she can read more about her health problems.
“You'd like to do it yourself, and not have to rely on others,” she said. “You really have to trust people when you can't read something for yourself.”
Hayden said that doctors can win that trust when they pay attention to the special needs of patients who cannot read, and don't just assume everyone is literate.
“I think it would help if doctors did more than just ask 'do you understand?' They should then tell them to write it out and show what you understand,” Hayden said. “And if they can't write it, then the doctor would know that they need special help.”
Rothman agreed that medical professionals need to keep literacy in mind as they work with patients.
Rothman has received additional grants to further explore the role of literacy and math skills in patients with diabetes, and to use this information to design an intervention program at Vanderbilt that will attempt to accommodate these patients to improve their ability to care for themselves.
To learn more about the Nashville Adult Literacy Council, or to become a volunteer tutor, visit www.nashvilleliteracy.org or call (615) 298-8444.