Say What? Why health literacy matters

Glioblastoma. The word didn't really exist for Tracie Stokes before Jan. 23. Just another five-syllable word in the medical dictionary.

But since that Friday, when doctors detected a tumor just wider than a quarter in her husband's brain, words like glioblastoma, radiation and chemotherapy have become integral parts of her everyday vocabulary.

"At first, it felt like being punched in the stomach, you can't quite catch your breath," remembers Stokes, a Citrus County middle school guidance counselor who spends her weekdays in Gainesville while her husband undergoes radiation therapy at the UF Shands Cancer Center. "That weekend, I just started looking up brain tumors in general on the Internet. I found some really good sites, informative without being too scary."

By the time she and her husband, Joseph "Cliff" Stokes, arrived in Gainesville for his biopsy, Stokes had a good grasp of what was wrong. Even still, there were questions the couple didn't know to ask when UF neuro-oncologist Erin Dunbar, M.D., explained his condition and discussed the options for treatment.

It doesn't matter whether a patient has a Ph.D. in chemistry or an eighth-grade education, coping with the influx of information that accompanies a diagnosis like cancer can be overwhelming and frustrating. To the lay person, the language of health care can be as confusing as trying to comprehend how derivatives and securities messed up the economy. The emotions and stress of health problems don't make comprehension any easier. But how well health-care providers foster this understanding and build communication with their patients is crucial, experts say.

According to the Institute of Medicine, about 90 million adults in the United States have what's considered limited health literacy, meaning about half of the population lacks some of the skills or background knowledge needed to navigate the health-care system and make choices. Why does this matter? Studies show that patients with low health literacy rack up more stays in the emergency room and accrue more health-care costs than other patients.

Beyond that, the flow of communication and information between provider and patient is key to empowering people to make their own health-care decisions, says Jeffrey Goldhagen, M.D., a UF associate professor of community pediatrics at the College of Medicine-Jacksonville.

"This is so much more than just do they understand ‘I am supposed to take pills today,'" said Goldhagen, who studies children's rights in health care. "In order to participate in generating health, an individual needs to have access to information, has to have a voice, has to be listened to and play a role in their own health development."

Patients left behind

A variety of issues affect how patients obtain information, and the traditional aspects of literacy, such as reading and writing, are just minor facets of the problem. Not all health-care providers take the time to build relationships with their patients. Health settings can be intimidating. Because of the Internet, information (some of it suspect) is ubiquitous, and news reports about health care and research can lead patients to conflicting conclusions. And because many people don't like to admit when they don't understand something, people often avoid asking questions.

Solutions seem to vary from expert to expert, but researchers across multiple UF colleges are working toward ways to improve health literacy and patient communication.

"We can't leave people behind," said Elizabeth Shenkman, Ph.D., chair of the department of epidemiology and health policy research in the College of Medicine. "It's a huge problem in this country. Frankly, when I saw the statistic I was surprised. I never would have thought 90 million people (would struggle) with understanding health materials."

This concept of better understanding the needs of patients isn't new, says Goldhagen, who describes health literacy as part of an evolution in medicine that's been occurring over the past few decades.

Ensuring that patients understand their health care and are active participants in decision-making is actually a patients' rights issue, he says. In the past, doctors prescribed, patients obeyed. Now, the goal is for patients to partner with providers and take charge of their own care, from eating right to remembering to follow up on tests.

"We're in this together," says Sharon Bradley, M.S.N., a clinical assistant professor of nursing. "It's not the health-care provider telling the patient what to do, it's really a relationship. There is some give and take."

The gray folder

In the month since Tracie Stokes' husband was diagnosed with cancer, the gray folder has become one of her most valued possessions. The folder, which Dunbar gave them, is stuffed with information on her husband's medication, blood tests he needs, potential side effects and symptoms as well as maps and other handouts.

But the folder is just a fragment of what Dunbar has done to educate the couple and guide them through all of the decisions they have had to make, Stokes says.

"She told us about clinical trials available all over the country," Stokes says. "We never felt pressured that we had to stay with her. She helped us think through the whole thing ... and provided all this information without making us feel like we didn't know anything."

Because of the complexity of her patients' cases and the vast amount of information they need to make decisions about treatment and clinical trials, Dunbar says she could spend a minimum of 20 hours with the typical family just getting them up-to-speed.

"You have to be able to explain to them not only what you think will be in their best interest, but also about the alternatives and the pros and cons of those alternatives," she says.

But as crucial as the task of arming patients with information is, it's also difficult for an individual to manage alone, especially in a health-care system where providers are increasingly asked to do more with less.

"The era of a single provider being able to provide this information in an office visit is over," she says. "We need a new model to get these patients and caregivers ready."

The librarian is in

Dunbar thinks a new type of team is necessary to meet patients' information needs. She has partnered with Beth Layton of the HSC Libraries and Gwen Lombard, associate program director for education for the neurosurgery residency program, to establish a pilot program that will embed a librarian in neurosurgery to help doctors provide more personalized, in-depth information to patients and resident physicians.

The goal of the project is to have the librarian, whose salary will be funded by a Sewell Foundation grant, become a part of the health-care team, working directly with doctors, trainees and patients in the hospital, Layton says. They hope to have a push-cart with a laptop the librarian can use in the hospital to help patients and residents get more information on a case-by-case basis. Aside from helping doctors unearth research and information for patients at the bedside, the librarian will collect and compile reliable information in a Web site HSC librarians are already developing.

"It's silly for each physician to be reinventing the wheel around the College of Medicine," Dunbar says. "The library is by far the best trained. They absolutely have the perfect situation to provide true, high-quality information across the board. They are such an untapped resource."

Building a trusted Web site that can be a clearinghouse for information is key, Lombard says, because often patients and family members don't think of questions they want to ask until the middle of the night. The group plans to study the project and the effects it has on improving access to health information. If it works well, it could be implemented in other departments.

"People aren't made with cookie cutters," Lombard says. "People have overlying conditions. You have to tailor a search for the patient, get them the information when they want it."

Learning for a lifetime

Although health literacy is an issue for many patients in general, several UF researchers are focusing on how communication and understanding affect specific populations of patients, particularly those dealing with chronic diseases such as diabetes and cystic fibrosis.

Jamie Pomeranz, Ph.D., an assistant professor of rehabilitation counseling in the College of Public Health and Health Professions, is working on a grant to assess the health literacy of parents whose children are newly diagnosed with cystic fibrosis.

"You have new parents who have a child and find out that child has CF," he says. "They're thinking the worst and just trying to adapt to having a child. When someone is talking to them, are they even listening?

"From a counseling perspective, we want to empower them. We try to empower our consumers (so they) make their own decisions."

Another population UF is focusing on is cancer survivors, who must be monitored not only for recurrence of their cancer, but also for effects of their treatment that can occur years into remission, says pediatric oncologist Patricia Shearer, M.D., an associate professor of pediatric oncology and founding director of the university's new Cancer Survivor Program.

Although the program includes all cancer survivors who have completed treatment and have been cancer-free for at least two years, one of its primary goals is to help young adults, who often have limited access to care. About 80 percent of young adults become long-term survivors, but transitioning from pediatric care to adult care can be a struggle. They also face barriers such as obtaining insurance, paying for care and understanding their own role in maintaining their health.

"It's crucial for the young adult cancer survivor to understand the type of cancer and treatment they had and what the follow-up needs to be," Shearer says. "You would think survivors might know what they had, but (often) they just don't. That's why the health literacy is so important."

To help develop more effective chronic care programs for these patients, Shearer and Shenkman are planning a pilot project to gather data about young adult cancer survivors' health literacy, coupled with other aspects of their care.

"Cancer care is on a trajectory; it's very important to get a handle on this," Shearer says. "We need to empower these young cancer survivors to manage their medical and psychological issues that emerge once cancer therapy is finished."