Christine Gunn, PhD, on Health Literacy and Language Barriers

By: Jeff Minerd

From: medpagetoday.com

Low health literacy and language barriers have been shown to negatively affect cancer screening and prevention behaviors, but less is known about how they affect a patient’s experience during cancer treatment. In new research, Christine Gunn, PhD, of Boston University School of Medicine, and colleagues hypothesized that poor health literacy and not speaking English would be associated with more cancer-related needs and lower self-efficacy scores in women newly diagnosed with breast cancer.

The team surveyed 262 women who spoke English, Spanish, or Haitian Creole, interviewing them at diagnosis and 6 months later using the Cancer Needs Distress Inventory (CaNDI) and other measures. The study, published online in JCO Oncology Practice, found that health literacy was considered adequate in 38% of the women, marginal in 33%, and inadequate in 29%.

Women with inadequate or marginal literacy had higher median baseline CaNDI scores (P=0.02) and lower self-efficacy scores (P=0.008), relative to those with adequate literacy. Haitian-Creole speakers had significantly lower CaNDI scores at baseline (P=0.03). These baseline differences remained significant after adjusting for demographics. At 6 months, most differences had disappeared, but lower self-efficacy scores persisted for Haitian-Creole speakers.

“The findings suggest that interventions oriented to mitigating health literacy and language barriers might reduce distress at the time of diagnosis and improve self-efficacy over the course of treatment,” the researchers wrote.

In the following interview, Gunn, a health services researcher in the Women’s Health Unit, elaborated on the findings.

Your study found that just 38% of women surveyed had adequate health literacy. Is this typical in patients diagnosed with cancer, and if so, why do you think so few patients are literate?

Gunn: This number is not out of line with other studies in safety-net populations. It also tracks with general literacy data in the United States from the National Assessment of Adult Literacy, which are admittedly dated with the last survey in 2003. Studies of cancer patients that assess health literacy do so using different measures, and are conducted in very different populations, making comparisons complex. However, many studies overrepresent white, college-educated individuals relative to the general population and find rates of adequate literacy that are higher than our study. So, this distribution of health literacy is not unexpected for the diverse population served by our institution.

You mentioned that research is starting to establish associations between psychosocial outcomes such as those in your study and clinical outcomes such as adherence to treatment. Can you tell us about one of these studies?

Gunn: Looking at the relationship between self-efficacy and medication adherence for adjuvant therapy for women with breast cancer, there was a study in 2014 that reported that different dimensions of self-efficacy predicted both intentional and unintentional adherence. I find this study interesting because when we talk about “nonadherence,” it is often implied to be intentional. In reality, treatment nonadherence can be both intended and unintended (arising from misunderstandings, etc.).

Your findings suggest that interventions to improve health literacy and mitigate language barriers might reduce distress and improve self-efficacy. What kinds of interventions do you think would be helpful?

Gunn: One solution mentioned in the study is patient navigation, which pairs patients with a lay health navigator who can help address barriers to care. While many cancer centers use navigators, they do not always have navigators who speak the native languages of all patients, or even a majority. There is certainly room for innovations in how navigation is delivered in a way that allows for efficiently providing culturally and linguistically concordant navigation within and across health systems.

There are also some programs that seek to enhance patient health literacy by integrating a health literacy curriculum into adult literacy classes. There are several studies out of Australia on such programs — for example, this one in the International Journal for Equity in Health.

Finally, is there anything oncologists can do right now in their practice to address health literacy and language barriers?

Gunn: In terms of health literacy, using techniques such as plain language explanations and teach-backs can improve comprehension among all patients, not just those with limited health literacy. Health literacy is contextual, and receiving a cancer diagnosis is an example of a situation where patients may not be able to process the complex information about their diagnosis, regardless of their education or basic health literacy. There are often opportunities to use simplified language and check understanding. Related to non-English speakers, the use of certified interpreters is still a fundamental need for patients. Many patients still use family members for interpretation, which is not the optimal practice.

Read the study abstract here and expert commentary about the clinical implications here.