During the 40th Annual Chemotherapy Foundation Symposium, Sandra Kurtin, PhD, ANP-BC, FAPO, discussed improving health literacy in oncology care.
When it comes to health literacy, many people tend to hold some key misconceptions, according to Sandra Kurtin, PhD, ANP-BC, FAPO.1
“People think about health literacy as: can you read?; Can you write?; Are you literate? But it's so much more than that,” Kurtin, who is a hematology/oncology nurse practitioner at the University of Arizona Cancer Care, as well as assistant professor of clinical medicine, and adjuvant clinical assistant professor of nursing at the University of Arizona, and who completed who her dissertation on health-related self-management, said in an interview with Oncology Nursing News®. “Literacy is about taking in information, synthesizing it, and then applying it toward managing your health.”
In a presentation on health literacy during the 40th Annual CFS, Kurtin noted that functional health literacy comprised of reading ability, writing ability, and basic language skills. Functional health literacy is what most people think of when they hear the term “health literacy.”2,3
However, as the healthcare landscape has changed, oncology practices have shifted from a more paternalistic model to a system where patients and caregivers are increasingly expected to take responsibility for more aspects of their health care. With the role of digital technology continuing to involve, and more and more cancer care occurring in the outpatient setting, health literacy as a concept has had to expand to reflect the different levels of cognitive, interpersonal, and social skills needed to adequately mange one’s health during cancer care.
In the modern era, health literacy has a direct outcome to health outcomes, Kurtin added, noting that health literacy influences access to and utilization of health services, interactions with health care providers and systems, symptom-management at home, caregiving skills, and the ability to participate in shared decision-making.
According to Kurtin, there may be people who cannot read, yet demonstrate a superior command on synthetizing health-related information. At the same time, there may be patients with an impressive academic background who struggle to do so.As an oncology professional, it is therefore important to assess where a patient or caregiver stands and use these indicators to help improve understanding.
“That may mean understanding schedules and all the logistics that it takes to see a provider,” she said. “In cancer care, [patients and caregivers have to understand] how to call someone if they need help, who to call, and how to call them. They need to be taught to truly be part of the team. To me, that's what health literacy is: it means you are able to participate in self-management and be part of the team.”
Self-management refers to a patient’s ability to handle the variables that occur across the cancer continuum, for instance, their ability to handle transitions in care settings, or their ability to “master” a threat to their stability, such as a treatment-related toxicity. According to Kurtin, self-efficacy is at the core of human agency, behavior change, and decision making, and consequently, a patient’s ability to manage their health has a significant impact in helping them feel stable and in control of their health. 4-7
She also noted that patient-centered communication is at the root of communicative health literacy and health self-management.
Different pillars of information require different communication techniques. For example, the disease information represents 1 pillar. When a patient is first diagnosed, they are likely asking the following questions: What do I have? What does it mean? How am I going to be treated—and what will that mean?
Moreover, they may have concerns about managing their therapy, understanding adverse effects (AEs), as well as preventing and mitigating the severity of those AEs.
The second pillar considers the fact that the patient is a whole person, Therefore, there may be myriad of specialists involved to help make that person whole. Patients must be taught how to effectively communicate with the rest of the heath team, from the cardiologists, the endocrinologist, to the primary care provider.
Delivering a diagnosis, assigning treatment, and noting the date of the next follow-up visit is insufficient,” Kurtin said. “We give [patients] some information, they get pamphlets, but we need to teach them how to be part of the health care team.” she said.
“As a provider, as a nurse practitioner, and as an oncology nurse for several years before that, I know that patients often tell the nurses way more than they tell the provider,” Kurtin said. “[This is] because they’re sitting in the chair for whatever amount of time and you get to talking and they may be afraid to say something to the physician or the advance practice provider, or because the visits are short, and [during that time] they are really focused on their physical exam and their labs and the details. And sometimes providers forget to get into the experience of it, and really get to their questions during clinical visits.”
“Nurses are really critical in that sense; they are a conduit for that communication,” she said. “But they also tend to have more time with a patient that isn’t so focused on all those details, but more on them. They’re critical to really providing that education.”
Nursing-led education is especially important in light of where most patients get their information. According to a study published in the Journal of Medical Internet Research, 83% of patients with chronic conditions (including cancer) and internet access use the internet to look for health information, 79% of caregivers have accessed to the internet and, among those with internet access, 88% use the internet to find health information.9 Moreover, as 85% of American adults own a cell phone, including 58% of adults aged 65 or older, the tendency to utilize the internet for health-related questions is continuing to trend.
Kurtin concluded her presentation with strategies to assess and improve health literacy and shared decision making. First, nurses should seek to know and understand the patient, including their culture, beliefs, and goals; their support network; their preferences for learning; their barriers to self-management; and their access or barriers to care. She encouraged nurses to be intentional and to set expectations. This means teaching patients how to prepare for a clinic visits, how to ask questions and whom to ask, and specific instructions involving their schedule, treatment plan, self-medication options, and reportable signs and symptoms that they are their caregiver need to monitor. Patients should also be provided with evidence-based information. 8
“The other thing that I really try to emphasize with the people that I work with is the importance of the consistency of message,” Kurtin concluded. “We all [should] be learning from the same sources and lifting the whole team up. What we say to the patient needs to be consistent from person to person—because if you have conflicting information that [negatively] affects health literacy. Nurses are important in the sense of carrying on the message and being able to reinforce the education for whatever prescribed therapy the patient is receiving.”