In order to maintain good health, patients are expected to communicate concerns clearly with providers, understand written and verbal instructions, partner with providers to make decisions about screening and choose treatment options, engage in self-management activities at home and in their communities, and negotiate a complicated and often fragmented health-care system. These are complex tasks requiring a high-level of health ­literacy. The various definitions of health literacy (Box 15-1) reflect a dynamic interplay between the literacy demands and attributes of the health-care environment and the personal skills of patients.

This chapter outlines the difficulties faced by patients with limited health literacy, with a focus on patient and system level factors. The chapter highlights the central role that clear communication plays in promoting health equity and high-quality care. We also provide clinicians with a set of strategies to improve understanding for patients with limited health literacy. These considerations are relevant not only to clinicians but also to anyone on the health-care team who interacts with patients or plays a role in designing or implementing health education or programming.

Health literacy skills are broader than general literacy skills. In addition to basic reading skills, the relevant skills needed by a patient include document-reading skills; writing skills; interpersonal communication skills; the ability to use numbers for computation, measurement, and risk assessment; and the skills needed to navigate systems—online, on the phone, and in physical space. Limited health literacy results when the complexity of health tasks and the demands of the health-care system exceed the skills of patients. Health literacy is content and context dependent. Limited health literacy is common and is more likely in people over the age of 65 years, individuals with chronic diseases, minority population groups, immigrants, and those without a high school education.^1,2 Acute illness or anxiety over a new diagnosis can also affect patients’ health literacy. As providers increasingly depend on patient skills and knowledge to manage chronic diseases such as diabetes, congestive heart failure (CHF), and COPD, ensuring that the literacy demand of the health-care system matches the literacy skills of individual patients which is of utmost importance. Because all patients, regardless of health literacy level, benefit from clear, direct communication and other literacy-friendly communication techniques, experts recommend “universal precautions,” or applying clear communication strategies, discussed later, in all clinical encounters (Box 15-2).

IMPACT ON HEALTH OUTCOMES

Limited health literacy has been linked to a wide range of adverse health outcomes.³ Compared with individuals with adequate health literacy, individuals with limited health literacy have higher rates of chronic illness, greater difficulty with medication management and poorer rates of medication adherence,^4,5 less knowledge about their chronic diseases,⁶ higher rates of hospitalizations due to chronic medical conditions such as CHF and diabetes,^7,8,9,10 have more emergency room visits and hospitalizations,^11,12 and experience worse chronic disease outcomes.¹³ Recent research among older adults connects health literacy level with cognitive decline, such as decreases in executive functioning.¹⁴

Limited health literacy has an impact on patients’ interactions with their providers. Patients with limited health literacy have a more difficult time understanding explanations about medical conditions and instructions about medication changes.¹⁵ Owing to embarrassment or shame related to incomplete understanding, patients with limited health literacy are often more passive during encounters, asking fewer questions, despite having greater need for reinforcement.¹⁶ These gaps in understanding make self-management and follow-up activities more difficult, and may contribute to poorer health outcomes. In addition, gaps in understanding can impede shared decision making and informed consent.¹⁷

Limited health literacy may affect patients’ ability to access care and navigate the complexities of the health-care system. For example, insurance companies or government programs often introduce hurdles that may be insurmountable to people with limited health literacy. Consequently, people may not seek care or may present for health care late with more advanced disease.

While most of these outcomes studies have focused on English-speaking countries, studies from other countries replicate these findings.¹³ In addition, newer studies are beginning to analyze health literacy skills beyond reading, such as numeracy and listening skills, and explore these skills’ impacts on health outcomes.^18,19

SCREENING FOR LIMITED HEALTH LITERACY

Miscommunication and misunderstanding are common during health-related interactions. Nonetheless, providers do a poor job of predicting who will have a difficult time understanding. Providers also tend to overestimate patients’ health literacy level.^20,21 A number of instruments to assess health literacy have been developed and studied, primarily for use in the research setting. The two most commonly used research tools, the Rapid Estimate of Adult’s Literacy (REALM) and the Test of Functional Health Literacy (TOFHLA), are word recognition and document utilization tests, respectively. While both tools have abbreviated forms, these shortened versions are cumbersome and can be intimidating to use in the clinical setting. A newer screening tool, the Newest Vital Sign, asks patients to interpret information contained on nutrition labels, mimicking real-life health management behaviors.²² In addition, a single-item self-reported screening question, “How confident are you in filling out medical forms?” can be useful in identifying patients with limited health literacy.^23,24 However, each of these screening tools focus primarily on reading and document interpretation skills, and to a lesser extent numeracy, as a proxy for health literacy skills overall. These tools omit assessment of interpersonal, bidirectional, communication skills—speaking or explaining and listening or verbal comprehension—literacy skills central to successful health-related exchanges.²⁵ Despite the availability of these screening tools, most health literacy experts and national health policy organizations recommend against routine screening for limited health literacy.¹⁵ There is insufficient evidence that screening improves health outcomes or enhances patient–provider relationships.²⁶

SYSTEM LEVEL FACTORS THAT CONTRIBUTE TO HEALTH LITERACY CHALLENGES

There is growing appreciation that characteristics of the health-care system contribute to, or can ameliorate, the challenges experienced by individuals with limited health literacy skills.^27,28 Training health-care professionals to communicate clearly and to choose literacy-friendly, written reinforcement tools are important steps to promote health equity for individuals with limited health literacy, but these strategies are often insufficient. As we saw in Mrs. S’s case, patients experience health literacy-related challenges not only within the clinic setting and while performing self-management tasks at home, but also as they negotiate health insurance plans, navigate health-care facilities, and communicate with other members of the health-care system team. Health-care organizations can recognize and address the system level factors that increase literacy demands. An Institute of Medicine (IOM)-commissioned paper²⁹ describes 10 attributes of “health literate organizations” (Box 15-3), providing guideposts for organizational change to achieve an environment that promotes access and understanding for all patients, regardless of health literacy level.