The National Assessment of Adult Literacy (NAAL) reported that approximately 30 million Americans were functionally illiterate in 2003, meaning they could not perform basic reading tasks necessary to function fully in society.1
Literacy is strongly correlated with health literacy—the ability to obtain, process, and understand health information to make appropriate decisions—with the latter involving content-specific demands.2–4
The NAAL found that an estimated 36% of US adults had only Basic or Below Basic health literacy skills and that vulnerable populations (racial/ethnic minorities, older adults, and those with low income) had lower health literacy. These findings are concerning given the complex demands placed on patients to read, write, compute, solve problems, and understand novel information in order to navigate healthcare systems and achieve good health.
Research has demonstrated that low literacy and low health literacy are associated with impaired patient-provider communication, patient nonadherence, increased hospitalization, and poorer health. Low literacy is also associated with patient exclusion from clinical trials and other studies, adverse reactions, and poor understanding of medical information.5,6
In addition, low health literacy has been associated with receipt of fewer preventative procedures, and less knowledge of disease self-management and ability to participate in treatment decisions.2,4,5,7–9
These findings have implications for the quality and costs of health-care for patients with low health literacy.10
Current conceptualizations of health literacy consider patients’ abilities as well as the demands of the healthcare system and its ability to deliver appropriate information and services.4,11
Good health literacy is a dynamic state reached when patients’ skills, preferences, and expectations connect with those of healthcare providers and resources. From a patient's perspective, health literacy touches countless aspects of care such as selecting providers, completing forms, comprehending concepts such as probability and risk, and understanding how to take medications. As expectations for patients to take active roles in healthcare increase, there are added demands to seek information, make health decisions, engage in self-management, and understand rights and responsibilities. Cancer and other chronic illnesses pose additional health literacy demands.
Oncology patients are expected to process large amounts of information about complex care delivered by multiple providers over long courses of time while also contending with related financial and legal documents.12
Ironically, patients and their families are asked to assimilate crucial information at times of great stress (eg, before surgery, shortly after diagnosis or disease recurrence, during end-of-life decisions) that are associated with anxiety-induced decreases in attention, comprehension, and retention. Further, patients often feel pressure during these critical times to make treatment decisions quickly given the seriousness of the disease.13
Many oncology providers are aware of these challenges and subsequently provide supplemental written material such as pamphlets about cancer and treatment, and sheets describing preparation for procedures. Unfortunately, much of this material is written at reading levels beyond those of patients’, and studies have found that recall of information by patients with cancer can be limited and inaccurate.13
Clearly, there is room to improve how the needs of patients with low literacy and health literacy are met; in this paper, we provide recommendations for oncology providers and clinics.