Health Illiteracy Challenges Long-Term Care

Abstract

WASHINGTON — An attending physician is talking to a new resident about her uncontrolled diabetes. He is discussing some treatment options, including some new medications. He hands the woman—and her son, who's with her—some written patient information about diabetes and a new drug. While the resident and her son are attentively nodding, the truth is that they have understood little of what the attending has said—and neither of them reads beyond a second grade level, so they are unlikely to understand the written materials. Unfortunately, such situations are more common than long-term care practitioners may realize. A study conducted about a decade ago found that many people aged 65 years and older have significant problems reading and understanding medical information about their health. In fact, the authors found that 34% of English-speaking—and more than 50% of Spanish-speaking Medicare enrollees had marginal or inadequate health literacy. As a result, they often misread simple prescription instructions, misunderstood blood-sugar test results, and didn't fully comprehend their rights and responsibilities. Simply put, health literacy is the ability to read, understand, and act on health care information. However, there is nothing simple about assessing or addressing health literacy in elderly patients. “This is an increasingly complex issue. There are more information sources than ever before, and insurance is a challenging, complex bureaucracy,” said Fred Kobylarz, speaking at the annual meeting of the American Geriatrics Society. Add to that, he said, the cultural influences that affect how someone interprets information and complies with treatments, and it's clear that physicians and others need to think twice about how they communicate with elderly patients and their families. Dr. Kobylarz stressed that studies have shown low health literacy to be related to lower use of screening and preventive services. Additionally, these patients often present for care at later stages of disease than do other patients, and they are more likely to be hospitalized. Health-illiterate people have a poorer understanding of treatment and their own health, adhere less to medical regimens, have increased health care costs, and die earlier. Health literacy is more than a predictor of individual behavior. It is, Dr. Kobylarz said, a “complex social determinant of health.” According to the National Assessment of Adult Literacy (NAAL), millions of Americans have “below basic” literacy. The organization determines literacy in three basic areas: prose, documents, and quantitative material. In 2005, NAAL indicated that 31 million Americans have below-basic prose literacy, 26.5 million have below-basic document literacy, and 49 million have below-basic quantitative literacy. This means that these individuals are unable to comprehend basic passages of text, consult reference materials, calculate the total price for a catalogue purchase, or understand a chart. Statistics such as these led the office of the U.S. Surgeon General to assert that limited health literacy is not an individual deficit but a systematic problem that should be addressed by ensuring that health care and health information systems are aligned with providers' and the public's needs. Fortunately, there are several tools that practitioners can use to assess health literacy. According to Dr. Kobylarz and his colleague Alice Pomidor, MD, these include the National Assessment of Adult Literacy and Health Literacy Component (NAAL/HLC); the Rapid Estimate of Adult Literacy in Medicine (REALM); the Test of Functional Health Literacy in Adults (TOFHLA); the Newest Vital Sign (NVS); and the single-item (or three-item) issue. Practitioners should use these tools cautiously, however. For example, Dr. Kobylarz noted that questions used in the single-item screen—such as “How often do you have someone help you read hospital materials?”—have a built-in “shame factor” that may prevent patients from giving honest answers. In fact, he stressed, shame is a key barrier to assessing health literacy. “In one study, almost 40% of patients with low health literacy who also acknowledged they have trouble reading admitted shame,” he said. Instead, Dr. Kobylarz suggested that practitioners use the mnemonic “SPEAK” to address health literacy issues: ▸ Speech. How will the patient or family member receive the health care provider's speech? Do all parties speak the same primary language? What role will an interpreter or family member play? ▸ Perception. How will the patient or family member perceive both the verbal and written content? What written language can the patient or family member read and understand? Do other characteristics—vision or hearing deficits or cognitive impairment—pose challenges? ▸ Education. What is the education level of the patient or family member? Are the education materials culturally appropriate? Can different information formats be used? Does the patient or family member have computer access and know how to use these technologies? ▸ Access. How will the patient or family member access the health care system? What is the patient's functional level? ▸ Knowledge. How will assessment of health literacy be carried out, and what tools will be used? These questions can help the practitioner determine what patients understand, where they need assistance, and what help they need. They also can uncover cultural or language issues that can lead to serious consequences. For example, Dr. Kobylarz related an instance in which a Spanish-speaking patient had a prescription with instructions to take the medicine “once daily.” However, “once” in his language means “11,” so he was overdosing and suffering dangerous side effects. In addition to using the SPEAK mnemonic, Dr. Kobylarz suggested that practitioners can watch for several other clues to detecting low health literacy. Such individuals may not have completed high school. They may frequently miss appointments, not know the names of their medications, make excuses for not being able to read information you give them (“I forgot my glasses”), look confused while you are speaking, and watch and mimic others' behaviors. Once practitioners determine that a patient or family member has low health literacy, they can do much to promote understanding and compliance without embarrassing or shaming an individual. “Be supportive and sensitive,” Dr. Kobylarz offered. “Speak slowly and start with a context. Use everyday language and avoid technical terms,” he said. “Have conversations in a quiet room, with minimal distractions.” Dr. Kobylarz also suggested being concrete and using the active voice, starting with the most important information first and limiting new information, giving no more than one or two instructions at a time, using repetition, and giving instructions to a family member or caregiver as well as the resident. “Be creative about reminders. Tape pills to a card, color code medications, or draw a sun to indicate that they should take a pill in the morning,” he said. While these efforts may be unnecessary in long-term care settings such as nursing facilities, they can be invaluable in assisted-living communities, where many residents are responsible for taking their own medications. Don't assume that patient-education materials or forms will be effective, even if they are designed for your patient population. Dr. Kobylarz recommended, “Assess the reading level of existing health information and forms. Rewrite them at the simplest level possible—usually a sixth-grade level. When possible, add photographs to communicate essential points.” “You can't assume everyone has a higher literacy level,” said Dr. Pomidor. She stressed that investing a few minutes to make sure patients and family members understand information and instructions is well worth the time and effort. Not only will it improve compliance with treatments and contribute to positive outcomes, but it can also solidify provider-patient relationships and remind elderly long-term care residents and families that physicians and other practitioners are their allies in quality care. Senior contributing writer Joanne Kaldy is a freelance writer in Hagerstown, Md., and a communications consultant for AMDA and other organizations. ▸ www.ama-assn.org/go/healthliteracy (AMDA) ▸ www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.html (National Institutes of Health) ▸ www.nlm.nih.gov/pubs/cbm/hliteracy.html#5 (National Institutes of Health) ▸ www.literacydirectory.org (America's Literacy Directory) ▸ www.chcs.org/resource/hl.html (Center for Healthcare Strategies Health Literacy Resources) ▸ Nielsen-Bohlman L. et al. Health Literacy: A Prescription to End Confusion. National Academy Press. ISBN 0309091179. 2004. ▸ Schwartzberg JG. Health Literacy: Help Your Patients Understand. American Medical Association. ISBN 1579475027. Dec 2003. ▸ Doak C. et al. Teaching Patients with Low Literacy Skills. 2nd ed. Lippincott Williams & Wilkins. ISBN 0397551614. 1996.