At least half of all Americans are at risk for consequences resulting from low health literacy
At least half of all Americans are at risk for consequences resulting from low health literacy (HL). These patients have poorer health outcomes and increased medical costs, and in some instances have experienced medical errors caused by communication breakdowns.[2–4] Efforts to mitigate the effects of low HL have been promoted by organizations including the Joint Commission as well as via initiatives such as Healthy People 2010. Patients with cancer are particularly vulnerable to the effects of low HL, owing to the complicated treatment regimens they receive. Oncology nurses can help by identifying patients who may be at risk and implementing strategies that can be used to help patients understand the information they receive.
HL is not simply the ability to read. Defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,” HL requires the complex skills needed to combine reading with mathematical calculations, analytical skills, and decision-making capacity, then applying these skills to healthcare situations. In addition, patients need to be able to communicate their health concerns and describe their problems accurately to healthcare providers. Combining these patient tasks and responsibilities with the complexities of cancer treatment is a formula for communication breakdown.
THE IMPACT OF LOW HEALTH LITERACY
Over the past decade, research has demonstrated the impact of low HL in the general population with alarming results. When compared to their counterparts, individuals with low HL have poorer health outcomes. With less knowledge of their conditions and treatments and lower self-management skills,[3,8–11] these patients have higher use of emergency services and higher rates of hospitalization. In addition, individuals with low HL experience poor recall and comprehension of healthcare instructions. Whether a result of this lack of understanding, lack of access, or other issues, low HL is associated with suboptimal cancer screening,[14,15] which can result in delayed or missed treatment.
Who Is at Risk?
The significant impact of low HL on patient outcomes makes the need for intervention clear. Identifying patients at risk, however, remains a challenge. Contrary to popular opinion, low HL affects all segments of the population. In fact, highly literate, well-educated adults have reported difficulty understanding the information provided to them. Someone with low HL cannot be identified by appearance, or even by knowing his or her educational or financial background.
There are, however, certain subsets of the population that are more likely to have low HL. Examples of groups at greater risk are the elderly; immigrant populations; low-income, minority groups; and those who speak a language other than English in their home. A healthcare provider caring for patients from any of these groups is highly likely to be caring for someone with limited HL. As a clinician, however, it is critical to understand that most patients with low HL do not fit into these categories, so awareness of the signs of low HL is important.
Research suggests that many healthcare professionals overestimate patients' health literacy skills. If individuals with low HL cannot be identified by the way they look or speak, or by how much education they have, how can a practitioner tell who is at risk? The most obvious answer is to use a tool designed to measure HL. A number of such tools are available in the literature, and while most are used for research purposes, some have been used to get a general sense of patient HL levels encountered in clinical practice.
Adding yet one more assessment to the list of those given to patients during visits can be burdensome. In an effort to increase the practicality of HL measurement in clinical practice, Weiss et al. developed the Newest Vital Sign. A relatively short assessment of HL consisting of a nutrition label for ice-cream and related information, this tool more accurately predicts low HL than age or education alone. In addition to logistic feasibility, some clinicians have expressed concern about testing their patients, concerned that patients may feel ashamed about the results. This was deemed not to be the case by one study of 600 patients, however, in which investigators found that assessing the HL of patients in clinic did not lead to decreased patient satisfaction.
Aside from formal HL assessment tools, research has shown that two specific questions are predictive of a patient's HL skills: “How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?,” and “How confident are you [about] filling out medical forms by yourself?”[21,22] These questions can be readily adapted into a pre-existing clinical assessment.
Signs of low HL can be observed by all members of the healthcare team. Administrative staff can look for forms that are not filled out accurately or completely, or can note when patients miss appointments. Many patients attempt to hide the issue, covering with statements such as “I forgot my glasses” or “I will fill these out when I get home.”
Nurses can also observe these and other clues from patients, such as the inability to name their medications, or report what a particular medication is used for, or state at what time they take it. Or perhaps patients do report that they are taking their medications but their laboratory test results do not change as expected. The presence of any of these clues should prompt further assessment of the patient's HL level.
Regardless of whether a formal measure of HL is used or a practice relies upon astute staff looking for clues, the simplest way to determine the patient's understanding is to listen. Many of these patients function perfectly well and have never told anyone about any difficulties they may have; therefore, as a healthcare provider, having a nonjudgmental attitude is key.
Regulatory bodies require that healthcare institutions be able to document evidence of patient understanding of the medical information provided to them.[5,23,24] Furthermore, HL issues are increasingly being considered in the development of cancer education and resources. It is much easier to provide information that is easier to understand than to directly increase your patient's HL level. To that end, learning communication strategies that will be effective for patients across a range of HL levels is the best way to assist patients in any clinical practice.
The patient experience begins with gaining access to the healthcare system. For many oncology patients this involves establishing a relationship with a new clinical practice. Many clinicians are unaware of the process patients must go through in order to obtain their initial appointment; therefore it can be eye-opening to trace those steps. Consider the number of phone calls, coordination of services to transfer records, management of releases, and so forth.
Once the patient is able to enter the physical location of the hospital or clinic, consideration should be given to how easy it is for patients to make their way to the office. What is the physical layout of the building? Are the signs displayed in the languages common to the population? Ensuring readability of signage extends beyond having translations and should consider the terminology used, as well as placement at a height and size that patients can read. “Wayfinding” refers to the visual clues available for a person to navigate his or her way through an organization. Universal symbols, such as those seen in airports and other large public spaces, have now been developed for use in hospital signage.
Today's medical practices are fraught with paperwork. Look at the forms that patients are required to fill out during their consult visit. How many times are patients asked the same question? The paperwork itself can be overwhelming, so only collect what is necessary. Offer patients assistance in filling out the forms, remembering that patients are often self-conscious of their HL limitations. Allow friends and family to help; they may act as surrogate readers and mitigate the effects of low HL. Using focus groups and including patients in the process of creating forms and materials are additional ways to help tailor a clinical practice to better meet patients' needs.
Extend the idea of “universal precautions” to communication, making sure that clear and plain language is provided to all. More information can always be added later, once it has been confirmed that the patient understands the information initially delivered. The primary means to facilitate patients' understanding is to avoid the use of medical jargon. For example, a study of HL in colorectal cancer screening found that participants did not know the meaning of commonly used terms such as “polyp” or “lesion,” and none of the participants knew what the colon is or where it is located.
By limiting the amount of information that patients are expected to learn in a single visit, the likelihood of successful communication is increased. Focusing on only one to three messages per visit is a general rule. Encouraging patient participation in the visit seems obvious, yet this can be overlooked in a busy practice. Ask Me 3 is a patient education program designed to do just that-facilitate communication between patients and healthcare providers. The program is designed to encourage patients in understanding the answers to three questions:
• What is my main problem?;
• What is important for me to do?; and
• Why is it important for me to do this?
Detailed information is available as a free download on the National Patient Safety Foundation website (www.npsf.org/askme3/). Educational materials developed for individuals with low HL can improve patients' knowledge of their treatment and disease. Using pictures in combination with simple words helps to deliver the message to patients with low HL. The Flesch-Kincaid Grade Level is a helpful tool that counts the number of syllables per word and words per sentence. Microsoft Word can calculate this level as part of its spelling and grammar function. The Health Literacy Style Manual offers a wealth of information regarding the creation of educational materials for individuals with limited HL skills.
During the course of the office visit, it is helpful to use a medical interpreter, not family members, to explain medical information to the patient. In a study of errors in medical interpretation, Flores et al. found errors were common and more likely to involve ad hoc interpreters. Remember, however, translation itself is not the answer; patients may also have HL issues in their native language. In a study of Latino patients' understanding of medication instructions after translation into Spanish, only 22% could correctly demonstrate how to use the medication. The language used with the translator should be simple and care should be taken to ensure understanding, as with all patients.
With regard to the use of translators, the same is true for best practice in obtaining informed consent. Independent of language considerations, the vast majority of people who sign consent forms do not read or did not understand the information in them. The consent document should be written in clear language, and the clinician obtaining the consent should engage the patient in a conversation about the extent of the surgery or procedure, rather than simply reading the text of the document to the patient.
Having conversations with patients rather than didactic teaching sessions is an ideal way to develop a sense of the patients' ability to apply learned information. For example, in medication teaching encounters, if a patient brought in his pill bottles, then the dates should be inspected. Questions should be asked about when patients take their medications, and the answers compared with the labels. Patients should be encouraged to explain concepts in their own terms. This concept is expanded more formally in the literature as “teach back.”
A “teach back” is the process by which patients are asked to recall and restate what they have been told. One of the top patient safety practices based on the strength of scientific evidence, this entails asking the patient to teach back to the treating clinician the healthcare information that was communicated, in order to ensure that the patient understands the information. Another means to get at the same point is to ask the patient, “How are you going to explain this to your friends/family?”
When the information to be taught is a skill as opposed to strictly information, the use of return demonstrations is recommended. Return demonstrations require that the individual being taught must physically demonstrate the skill at hand to the healthcare provider.
Whether communicating in written form or verbally, the prescription for enhancing communication with patients who have low HL is to use short words and short sentences containing only essential information. Additional resources can be found at the US Department of Health and Human Services website (www.health.gov/communication/literacy/default.htm) and the National Cancer Institute website (www.cancer.gov/cancerinformation/clearandsimple).
Table 1 provides suggestions for integrating information aimed at individuals with low HL into nonhealthcare settings.
The shame and stigma associated with low HL are a major barrier to improving it. Because individuals with low HL often do not express their concerns in the healthcare environment, nurses must be aware of the problem and have the skills necessary to identify those at risk. Communication with individuals who have low HL must be done in such a way that the patient's understanding can be evaluated. Finally, it is important to share effective communication strategies with other healthcare providers. Effective communication is the cornerstone of patient safety, and patients with low HL are among the most vulnerable.
Financial Disclosure: The author has no significant fi nancial interest or other relationshipwith the manufacturers of any productsor providers of any service mentioned inthis article.
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