CHICAGOLow literacy remains a formidable stumbling block preventing many Americans from receiving optimal cancer treatment and preventive measures.
This article highlights the efforts of two researchers to bridge the literacy gap that separates medically underserved, low literate populations from effective cancer care. Gilbert Friedell, MD, and Douglas Bradham, DrPH, presented their work at the Second Annual Robert H. Lurie Comprehensive Cancer Center Health Policy Symposium.
Several recent guidelines have been established to ensure that patients comprehend the written information given to them. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) has mandated that hospitals establish a process to determine if patients can readily understand their informed consent procedures, medication and discharge instructions, and other communications.
There are several possible mechanisms to accomplish this goal: screening all patients for literacy level, rewriting all materials at the fifth grade level, and providing information through video and interactive multimedia.
The National Cancer Institute has established the Cancer Education Program charged with communicating cancer prevention, early detection, and treatment information to individuals with limited literacy skills.
As a result of increased efforts to reach low literacy populations, the National Work Group on Literacy and Health (formerly known as the National Work Group on Cancer and Literacy) was convened. Dr. Gilbert Friedell was invited to participate and has served as a co-author of the recommendations presented below.
Identification of persons with low literacy skills. There are several currently available tests of literacy that can be administered in a few minutes.
The Rapid Estimate of Adult Literacy in Medicine (REALM) and the Short-Test of Functional Health Literacy in Adults (S-TOFHLA) are widely used instruments to assess the reading ability of an individual in the health care setting.
The S-TOFHLA is currently available in both Spanish and English.
More extensive reading and comprehension instruments available to the researcher include the WRAT-R, MART, Cloze, PIAT, and IDL. Instruments to assess the literacy level of written material include the SMOG, Flesh-Kincaid, Dale Chall, Fry, and FOG.
Screening for literacy can be an important first step to reaching out and tailoring communication to patients of low literacy, many of whom will try to mask their poor reading ability. Screening can also be helpful for researchers studying low literacy populations.
Self-Reports No Substitute
Dr. Douglas Bradham noted that many common instruments, such as quality-of-life questionnaires, exceed the reading ability of their target audience and unknowingly introduce bias into their data. He further warned that self-reported educational attainment is an extremely poor substitute for actual assessment of reading ability.
Thus, Dr. Bradham recommends that both research instruments and the target audience be screened to ensure a match between level of difficulty and reading ability.
In research and in clinical practice, literacy screening could identify individuals who could be attended to by a nurse or interviewer to ensure comprehension of the task.
Before implementing screening, however, staff should be made aware of the shame patients feel regarding their own low literacy and trained on sensitive methods of addressing the topic.
Use of pamphlets and videos in cancer education for low literacy levels. Materials written at the fifth grade level have proven to be effective and appropriate for low literate and advanced readers alike. Materials created to target readers with low literacy skills should use only common one- or two-syllable words, large fonts, and plenty of space between lines to make the text look easy to read. An explanation of any unfamiliar words should be provided.
The Cancer Information Service (CIS), an NCI initiative, has developed and extensively tested fact sheets written at the fourth grade level and found them to be effective in communicating facts to low literate audiences. CIS has expanded to provide more community-based coverage across the country and can be reached at 1-800-4-CANCER.
Use of Videos
Videos have also been found effective as an alternative to printed material. Meade et al conducted a randomized trial on the relative efficacy of a low literacy brochure and a video in colon cancer screening education. Patients with low literacy skills who viewed the video and those who read the brochure were found to achieve similar comprehension scores.
Use of community outreach programs. In Appalachia and eastern Kentucky, poverty and illiteracy are extremely concentrated, and, consequently, the incidence and mortality from cervical carcinoma are disproportionately high. Less than 45% of women from eastern Kentucky will ever receive a high school diploma, and nearly 20% are Medicare recipients. These women represent the lowest percentage of women receiving mam-mograms.
Through use of community health advisors, Dr. Friedell has worked to increase cancer screening among Appalachian women. Women from the community (volunteers or paid staff) were trained to educate and encourage their peers who had not obtained a mammogram or Pap smear in the last 3 years. This strategy proved to be very effective in increasing the rate of mammography and Pap smear screening.
Comunity health advisors are successful because they amplify health messages and facilitate entrance into otherwise foreign and possibly intimidating local screening programs.[6,7]
Dr. Friedells approach demonstrates the importance of community involvement and attention to culture, and is readily adapted to a number of health care settings.
Another successful intervention incorporated low literacy cancer modules on risk reduction, early detection, and treatment into Kentucky literacy training programs.
A train-the-trainers program was also effective in helping nurses and literacy teachers promote comprehension of low literacy fact sheets provided by the Cancer Information Service.
Although low literacy is associated with many other barriers to health care, such as low income, low level of education, and cultural barriers that are often difficult to address, clinicians can provide high quality care by ensuring comprehension of their advice and instructions.
In a modeling effort incorporating data from several independent trials, Dr. P. Ley found that those patients with adequate comprehension were two to three times more likely to have adequate compliance and recall, and to feel satisfied with their physician-patient communication.
This section will summarize some of Doak et als suggestions for improving communication with low literate patients, who often have very different cultural backgrounds from that of their physicians.
Patients with low literacy skills may create their own medical instructions on the basis of fragments of information they understand or tune out when the physician presents them with new instructions as they struggle to understand what was said earlier.
To overcome this barrier in addressing patients with low literacy skills, health care providers must understand their patients logic, language, and experience. For example, to convince a migrant farm worker that a mammogram is important to her, the information would be more appropriately presented in the cultural context that screening tests could also benefit the health of the family.
Match Language to Listeners Level
Language, both written and spoken, should be matched to the level of the listener. Words that are very clear in the physicians mind may not be comprehensible to the patient.
Although almost everyone is familiar with the word cancer, related words such as lesion, prognosis, biopsy, and metastasis are not widely understood. However, simplifying speech and text is not sufficient to ensure understanding, especially if the message itself is not made relevant to the patient.
Physicians and patients often employ very different logic in health care. For instance, many patients lacking a scientific background find it logical to stop taking medicine as directed once they begin to feel better.
Problems With Inference
Physicians also tend to focus on epidemiologic facts and expect patients to infer appropriate behavior. Poor readers are far less likely to learn behavioral information through inference, and if statistical data are presented first in printed material, patients may tune out the message altogether because of a perceived lack of relevancy.
Doak et al suggest several techniques to make sure patients understand the advice they are given and remember what they have heard (see Table).
The most important part of effective communication is verifying that the patient comprehends the information provided. An important technique physicians should employ to ensure comprehension is to request that patients repeat the information in their own words. This process requires the patient to think and interpret the message in a familiar language, registering it in the patients memory.
Yes or no questions such as Do you understand? are not very helpful or informative.
In all cases, simple advice and instruction, especially those that focus on behaviors, are far more likely to be effective, especially for patients with limited literacy skills.
In his talk at the Second Annual Cancer Care Symposium, Dr. Friedell said, Literacy is more than reading and writing. It is the ability to access information, make decisions, and add overall to the quality of life. In reaching out to medically underserved populations, he said, communication is the first intervention we must think about.
Medical students and physicians alike need to be made aware of the relationship between literacy, cancer, and health, and to be trained in techniques to communicate with patients of all backgrounds and literacy levels.
Communication is essential to allow patients to responsibly manage their health, and clinicians need to verify that patients comprehend the information and advice provided to them.