Health Literacy: What Do You Know?

Part of my clinical role involves educating and informing patients about the risks and benefits of the various treatment options related to prostate cancer. Like many bed- or chairside nurses, I spend a lot of time talking and listening to my patients. I am sometimes surprised when I get a call from a patient who seemingly did not hear or understand something that I told him or her. I know I told the patient, and I think I am a good educator, so why the confusion? The answer is, in part, simple—health literacy (or the lack thereof).

According to the U.S. Department of Health and Human Services (n.d.), health literacy refers to the ability of individuals to access, process, and understand health information to make decisions about treatment and their health in general. This ability is influenced by individual and systemic factors and has little to do with basic literacy skills, or even level of education. Being able to navigate the healthcare system is another defining characteristic of health literacy, and oncology nurse navigators have, no doubt, been a significant help in this regard. An older study (Kirsch, Jungeblut, Jenkins, & Kolstad, 1993) found that just 12% of American adults are proficient in understanding health-related information. A more recent study of U.S. adults found that 46% of the population have restricted health literacy (Rudd, 2007). This is alarming, particularly given the kinds of information individuals with cancer are given and the ramifications of misunderstanding.

Health literacy is a topic of interest within oncology, where patients, often at extremely stressful times, have to make complex decisions about treatments with life-altering consequences. In this issue of the journal alone, six articles involve health literacy in one way or another (see Admi, Yael, & Ben-Arye, 2017; Coolbrandt et al., 2017; Dose et al., 2017; Flocke et al., 2017; Nguyen-Truong et al., 2017; Purdom, Petersen, & Haas, 2017). We all have had patients who miss appointments, do not attend follow-up appointments or referrals to specialists, do not complete registration forms or questionnaires they are given, are nonadherent to medication regimens, or give a rambling history. According to the Agency for Healthcare Research and Quality ([AHRQ], 2015), these all are potentially related to low health literacy. Assuming that your patient is a healthcare professional, or otherwise highly educated, and talking to him or her at a high level is a mistake that is commonly made. I recently went for some physiotherapy treatments and felt my eyes glazing over when the therapist started talking about my psoas muscle (and where is that again?). I reminded him that (a) I am years away from my anatomy class, (b) I am a patient and not a nurse in his clinic, and (c) I would like simple and plain language explanations of why my leg hurts and how it could be fixed. I did not feel embarrassed about this, but our patients may and, therefore, appear to listen while not understanding our complex instructions.

AHRQ (2015) has a useful resource for clinicians and health educators titled “Health Literacy: Hidden Barriers and Practical Strategies” (http://bit.ly/2iCFnIo). The resource details not only the problems that our patients face in understanding complex health issues but also some practical strategies that can be used to mitigate the effects of general low literacy, age, education, the social determinants of health, anxiety, etc. This is an area ripe for further study, and a recent search of the literature suggests that nurses are by and large not the ones doing research in this area. This is somewhat surprising given the nature of the work we do in communicating with and educating our patients.

Advances in cancer treatments are happening at warp speed, and it is difficult for many of us to keep up with the new knowledge that is generated and reported each and every day. Understanding the intricacies of precision medicine and targeted therapies is challenging for many nurses and likely overwhelming for many of our patients. So, we are doubly challenged to understand new findings and interpret these for our patients, making the issue of health literacy even more important in the 21st century.

About the Author(s)

Katz is a clinical nurse specialist at the Manitoba Prostate Centre and a sexuality counselor for the Department of Psychosocial Oncology at CancerCare Manitoba, both in Winnipeg, Manitoba, Canada. Katz can be reached at ONFEditor@ons.org.