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Cancer-Patient Reading Levels in the
Real World

By Susan J. Scown

ABSTRACT: A variety of research studies have concluded that many patients are of relatively low literacy, and some suggest that under the stress of cancer, reading ability drops further. Patient educators are often advised to keep health-information materials short and reading levels low: physicians in JAMA focus groups even said no higher than sixth-grade level. By contrast, members of JAMA's corresponding patient focus groups indicated that they wanted comprehensive information and were comfortable with material written for a range of from 9.4 to 12 years of schooling. In a serious condition like cancer, a significant proportion of patients may welcome comprehensive materials written at a high level. They may have a greater need for information in order to face a life-threatening disease; a greater need for participation in treatment decisions; and greater exposure to medical information (or sometimes disinformation) through the media, pharmaceutical companies, government agencies, Internet sites, and support groups. The oncology nurse needs to take into account the fact that patients today may feel the need for more information than might typically have been offered in the past as well as the fact that patients have a wide range of needs for information, from basic to very sophisticated. Research findings presented here can help nurses make sense of patients' informational needs and capabilities when choosing among a range of materials.

When it comes to patient-education materials, one size does not fit all. Nurses, who are on the front lines of the patient-education task, find a wide range in patient's abilities to read and comprehend. Some people can't read at all, while others come to their healthcare providers well informed about certain aspects of their illnesses. While brief, simple pamphlets may satisfy many patients with conditions that are not life-threatening, cancer motivates some people who might not ordinarily read extensively to dig deeper and stretch beyond their normal reading levels and preferences.

Cancer Care Issues in the United States: Quality of Care, Quality of Life, a report by the President's Cancer Panel for 1997-1998, said, "Many segments of the consumer population are becoming more sophisticated medical information seekers and more demanding concerning the quality of the health care they receive."1 In addition to exposure to health information on radio and television, in news and popular magazines, and through books, the growth of health information on the Internet has contributed to the medical knowledge of many consumers. Cyber Dialogue, an Internet customer relationship management company, has estimated that the number of people seeking medical information on the World Wide Web will increase from 17 million in 1998 to more than 30 million by 2001.2 And whether patients have been reading pamphlets, books, magazine articles, or web sites, many want still more information or explanations of what they have found.

A simplistic approach to selecting patient-education materials just doesn't work in the real world, and not all patients are well served by materials written for the lowest common denominator. An extensive range of basic patient-education materials is already available for cancer patients, including free booklets and information on web sites like that of the American Cancer Society and the National Cancer Institute. However, nurses need to be aware of other high-quality resources to meet the needs of a diverse patient population, including those who want to go beyond easily discoverable information or who need information in a specific format. How can you determine which materials are comprehensible for particular patients while still substantial enough to meet their needs for information?

Generic recommendations for patient-education materials

As described in the article "Tips on Developing Patient Education," published by the University of Virginia Health System's Center for Organizational Development, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) suggests that patient-education materials be written at a fifth-to-eighth-grade reading level.3 The American Academy of Family Physicians' Health Education Program recommends a reading level of seventh grade or lower.4

What does "reading level" mean?

In 1981, the National Cancer Institute said, "Measures of readability determine the reading comprehension level a person must have to understand written information. These measures indicate if a printed piece is written at a level which can be understood by its target audience.5 Reading levels are commonly described in terms of school grades (eighth grade, for instance), level of education achieved (college) or number of years of education (12 years). Most reading level definitions are based on what someone who has completed that level would be expected to be able to read with complete comprehension.

There are dozens of formulas for calculating reading levels of printed materials, generally involving some combination of sentence length and word length. In writing about medical topics, technical terms are often necessary. Many are long. Even if a medical term is defined in a piece of writing, making it understandable to the reader and therefore not substantially hindering readability, its very existence in the piece raises the calculated reading level. A document could be written with great clarity in short, simple sentences but still receive a high reading level score because of the presence of medical terms.

In "Readability Testing Health Information," Sandra A. Smith, MPH, CHES, describes several readability formulas. Pointing out that, so far, no formula has been specifically designed for health and medical materials, Smith says she likes the Flesch-Kincaid Index best for self-care instructions and medical information. "Like the military training manuals it was designed to test, this information is meant to be understood and acted upon by adults under stress and necessarily contains technical terms."6 In "Comprehension," She suggests as a quick test of readability that you "read aloud a few paragraphs from various sections of the material you are considering. If you run out of breath between periods, or the words tangle your tongue, continue your search for effective materials."7

Smith notes that the 1992 Adult Literacy Survey showed that about half of US adults read at or below the eighth-grade level. In "Reading Level," she says, "Even for sophisticated populations, materials designed to educate readers about health conditions and medical care require a low reading level.... [U]nderstanding decreases when the topic or the terms are unfamiliar...."8

Smith's observation that no reading level formula has been specifically designed for health and medical materials may be an important key to understanding conflicting views about the readability of the JAMA Patient Page, a patient-education article in each issue of the Journal of the American Medical Association.

JAMA's solution

JAMA editors calculated the reading level of their Patient Page at between 9.4 and 12.0, which was within their targeted high school level. In April 1999, on the one-year anniversary of launching the Patient Page, its editors published an editorial on the subject. Having received letters from healthcare professionals expressing concern about the reading level and the font size of the text, the editors conducted focus groups of physicians and patients. While the physicians in the focus groups suggested that the reading level was too high and should be brought down to the sixth-grade reading level or lower, the patients felt that the page was readable and understandable as it was. The editors said, "[W]e routinely use technical medical terms (in bold face) followed by a lay definition in parenthesis. The medical terms and the definitions add complexity and length to the sentences. When we reanalyzed the Patient Pages with the technical terms and parenthetical definitions removed, the reading level decreased anywhere from 1 to 5 grade levels." They responded to the physicians' concerns by changing the font size and layout to facilitate reading, but they didn't decrease the reading level.9

After this, JAMA received more letters from physicians and public health professionals complaining about the high reading levels, which the editors published in August 1999.10 The editors noted that the patients themselves liked the use of technical terms and welcomed learning their definitions on the Patient Pages.

Take-home lessons here include the facts that:

  • Patients need and want to know medical terms and their definitions
  • The placement of definitions for medical terms has an impact on reading level
  • If healthcare providers are going to accurately gauge the reading levels of patient- education materials, they need a formula that takes the necessary presence of medical terms into account.

The complexity of achieving low reading levels

Patient-education materials can be made easier to read by taking the definitions out of the sentences and placing them separately in a glossary. However, moving the definitions to a separate place may also hamper comprehension. The reader may lose the gist of what is being read when moving back and forth between the text and the glossary. Also, some readers probably won't take the extra step of moving back and forth if they become tired or frustrated by having to do so.

As long as we don't have a reading-level formula designed expressly for health and medical materials, patient educators need to take this problem into account when calculating reading levels. They can use a formula that makes at least some allowance for the presence of technical terms, like the Flesch-Kincaid Index, or use the method of the JAMA Patient Page editors and analyze reading levels after removing technical terms and their definitions. Another option for analysis would be to substitute for each word of a term and its definition the median or average word length in the rest of the document.

Don't talk down to me

In focus groups conducted by editors of the JAMA Patient Page, patients indicated that information written at the high-school level was understandable: they didn't want the Page further simplified or the amount of information on it sacrificed to an easier-to-read design involving a larger font or more white space. One patient said, "We have general knowledge about medical things because you see it everywhere--it's all over the news. We are a very informed society."9 Lucy Thomas, M.L.S., is director of the Reeves Medical Library in Cottage Hospital, Santa Barbara, California, and a distinguished member of the Academy of Health Information Professionals of the Medical Library Association. A longtime advocate for free access to information and for the rights of the healthcare consumer, Lucy said, "I've found that patients quickly become sophisticated researchers in the particular area of their own diagnosis--a twelfth grade reading level is easily understood--especially if the material is accompanied by a few visuals such as an anatomy book and/or graphs" (personal communication).

Achieving low complexity but high quality

It may be reasonable to ask providers of health information to make the substance of a topic clear while writing at an eighth (or lower) grade level, but make sure that the process of simplification doesn't sacrifice the meaning of the material. In addition, be aware that reading more than a few short, simple sentences in a row may bore patients or even insult them, suggesting an elementary-school tone. You don't want patients throwing down a booklet in frustration because they can't read it. However, you also don't want them throwing it down in frustration because it's unpleasant to read--or because they already know that the subject is complex from reading about it elsewhere and, so, doubt the usefulness of a short document.

Extreme simplicity may work better for short documents than for long ones. For extensive information, patients who read adequately can handle--and may be happier reading--material written at a slightly higher reading level, provided that the higher reading level results from good, meaningful writing rather than careless complexity. If patients of low literacy need more information than can be presented in a short document composed of short sentences, perhaps verbal teaching, participation in support groups, and/or audio or video instruction is a better option.

Be aware that it takes time to simplify something that has originated as a complex statement. It takes longer to write patient-education materials to stringent standards for lower reading levels, and more time may mean higher cost, even though the end product may look trivial compared to a more complicated product. Your evaluation of patient- education materials needs to take note of the difference between high-quality, comprehensive information conveyed clearly and simply versus information that is just watered-down and superficial.

You can also guide your patients to information from sources other than typical patient- education booklets: books incorporating the experiences of patients who have confronted the same medical issues, live and online support groups, Internet resources you gauge as sound, and news magazines, to name a few.


What is a reasonable goal for comprehension of patient-educational materials? Is it necessary for all patients receiving a document to understand all of it? That depends on the goal of the information. Thomas H. Short, Helen Moriarty, and Mary E. Cooley tested the readability of 14 patient-education pamphlets published by the American Cancer Society and 16 pamphlets published by the National Cancer Institute as well as the reading levels of a 63-person sample of outpatients at the Philadelphia Veterans Affairs Medical Center. In this study entitled, "Readability of Educational Materials for Cancer Patients," they scored the median pamphlet readability as ninth-grade level, which was the same as the median patient reading grade level. However, they said that 27 percent of the patients would not fully understand any of the pamphlets.11

As an exercise for a Duke University computer laboratory, Erik Moledor conducted a follow-up statistical experiment evaluating this study and found that over half of randomly selected participants in the study given a randomly selected pamphlet would not have fully understood the material. Moledor concluded, "It appears that information pamphlets given to cancer patients are not always fully understandable to the patients.... If there can be severe consequences of misunderstanding or not fully understanding one of these brochures, this matter should be investigated further. If more conclusive evidence is found that the pamphlets are not understandable, measures should be taken to identify patients who will need help with the information, or new, more easily understood brochures need to be developed."12 Moledor puts his finger on the most important issue: if a patient doesn't understand something, will there be a severe consequence? Severe consequences have occurred to patients who didn't understand their written instructions on leaving emergency departments or who couldn't read the instructions from the pharmacy on their medicine bottles.

How much is enough?

When selecting patient-education materials, it's not enough simply to match patients' levels of literacy as measured by reading-grade level. Some patients may have either lifelong or cancer-related cognitive problems such as dyslexia, difficulty giving prolonged attention to reading, or difficulty remembering what they are reading. Some have less energy for reading when they are ill. Some find it hard to tolerate the stress of reading something that may disturb them. And some simply don't have much time to read. Certainly patients who may be having trouble absorbing basic information they need should be warmly and frequently encouraged to ask for clarification. It might also be feasible to back up the most crucial instructions with simple technologies, such as tape recorders or small hand-held reminder devices.

On the other hand, many people, particularly those who do read well, find that knowledge provides comfort and a sense of mastery and hope. When the health issue is as serious as cancer, many patients who are not normally highly motivated to read, will do so and make an effort to understand a good deal more than they otherwise would. Patients who want greater depth of information benefit from comprehensive materials and should be given that type of information or at least told where to find additional resources.

Diversity in needs for information

Patients vary in what type of information they want at various points in their illness. Some need primarily technical information about treatment, some want to know how to cope with practical matters, and others seek the comfort of knowing how other patients have dealt with the problems they are confronting. It is sometimes difficult to find all of these things covered in a single source.

Some patients rely on a family member or friend to serve as their researcher. This may be the person who actually reads the patient-education material and interprets it to the patient. When the designated information seeker for an older patient is a child, there may be a difference between how comfortable the patient is with the level of material and how comfortable the child is. Lucy Thomas said, "If the patient is a mentally competent adult, I've found that they should at least see all of the medical literature on their condition. Sometimes the researcher has a strong point of view, like a husband desperate about losing his wife or children fearful of losing a parent. In those cases the involved researcher has tried to inject bias into the research. They do things such as only finding treatment protocols, but leaving out that those protocols might be experimental, have terrible side effects, and have no known positive outcomes" (personal communication).

There is also a growing diversity in the native languages spoken in the US. Some hospitals have staff or volunteer translators on call. To accommodate a growing Hispanic population, some providers of patient-education materials now increasingly make them available in Spanish. In 1999, the American Cancer Society launched a Spanish-language version of its web site, complementing their existing Spanish-language brochures and booklets and the services of Spanish-speaking information specialists at the ACS's call center. The National Cancer Institute staffs the Cancer Information Service with information specialists who can respond in Spanish and provides printed information in Spanish, including the Physicians Data Query (PDQ) statements, CancerMail (cancer information delivered by email and accessible by "gopher" on the Internet, and CancerFax (cancer information delivered by facsimile).

What is your patient's level of literacy?

B.D. Weiss, J.S. Blanchard, and D.L. McGee reported in "Illiteracy Among Medicaid Recipients and Its Relationship to Health Care Costs," that the mean reading level of US adults is at grade 8, and the mean reading level of Medicaid enrollees is at grade 5.13 In "Improving Patient-Education for Poor Readers," in the Nursing Spectrum--Career Fitness Online, Kenneth Brownson, RNC, EdD, says, "On average, adults' reading levels are about five grade levels lower than the last grade completed."14 These statements give you some general expectations, but how can you gauge a specific patient's level of literacy and whether he or she is likely to be able to read and understand the printed material you provide?

Anne Stapleton, RN, is Patient Education Systems Coordinator at Wake Forest University Baptist Medical Center. In "Poor Reading Skills Associated with Poor Health," she writes, "One method you can use to screen for illiteracy is to give the patient the publication upside down. People who read will probably turn the material; non-readers may not. If there is doubt about patient literacy, you might offer options by saying something like, "People learn in different ways; they often know what works best for them. I will leave this book here for you; the same information is on TV channel 42 at 9:00 a.m. or we have a class at 10:00 a.m. on Thursday. You can choose one of these or all of these methods."15

Kenneth Brownson describes two easy ways to test the reading level of patients. He says that nurses can give a patient the Wide-Range Achievement Test (WRAT3) in about five minutes or the Rapid Estimation of Adult Literacy in Medicine (REALM) in one or two minutes. Although some patients may become anxious, he says that most will enjoy the attention they receive by participating in the test, especially if the nurse explains its purpose--to make user-friendly handouts. To save time and money, Brownson suggests that all materials be set at the sixth-grade reading level, which allows for at least 75 percent of patients to be able to read them.14

What are your options?

You can give all of your patients comprehensive information and allow them to read to their own personal saturation points. You may then need to draw out and answer questions from patients who had difficulty with the material.

Alternatively, you can provide for just the lowest common denominator and give patients who want and need more information pointers to additional resources. However, that is asking patients who may already be overwhelmed to track down their own patient- education materials.

The optimal solution--to stock a variety of materials geared to different needs--is subject to the limits of costs, the storage space available, and the effort it takes to order and select among materials.

Your resources, both financial and time-related, will have a bearing on which approach you take. In the end, ensuring that patients are well informed should prove worthwhile. In "Evaluating and Creating Effective Patient Education Programs," Michael R. Toscani, PharmD, and Richard Patterson point to the following results: better clinical outcomes, reduced healthcare utilization, improved health-related quality of life, greater patient satisfaction, and reduced cost of healthcare.16

Notes and links

1. Cancer Care Issues in the United States: Quality of Care, Quality of Life, the President's Cancer Panel for 1997-1998.

2. "Patient, Heal Thyself," Todd Woody, The Industry Standard.

3. "Tips on Developing Patient Education," Center for Organizational Development, University of Virginia Health System.

4. "Evaluating Materials--Notes & References," Sandra A. Smith, MPH, CHES, Practice Development Inc., 1998-1999, online at The PrenatalEd Site.

5. "Readability Testing in Cancer Communications," National Cancer Institute, DHEW Publication No. 79-1689, Bethesda, MD

6. "Readability Testing Health Information," Sandra A. Smith, MPH, CHES, Practice Development Inc., 1998-1999, online at The PrenatalEd Site.

7. "Comprehension," Sandra A. Smith, MPH, CHES, Practice Development Inc., 1998- 1999, online at The PrenatalEd Site.

8."Reading Level," Sandra A. Smith, MPH, CHES, Practice Development Inc., 1998- 1999, online at The PrenatalEd Site.

9. "Health Literacy and the JAMA Patient Page," editorial, Journal of the American Medical Association, Vol. 281, No. 16, April 28, 1999.

10. "Educating Patients: One-Year Anniversary of the JAMA Patient Page," editorial, Journal of the American Medical Association, Vol. 282, No. 6, August 11, 1999.

11. "Readability of Educational Materials for Cancer Patients," Thomas H. Short, Helen Moriarty, and Mary E. Cooley, Journal of Statistics Education, Vol. 3, No. 2, 1995.

12. Erik Moledor's interpretation of the study in note 9.

13. "Illiteracy Among Medicaid Recipients and Its Relationship to Health Care Costs," B.D. Weiss, J.S. Blanchard, and D.L. McGee, Journal of Health Care for the Poor and Underserved, 1994; 5:99-111, Medline abstract online.

14. "Improving Patient-Education for Poor Readers," Kenneth Brownson, RNC, EdD, Nursing Spectrum--Career Fitness Online.

15. "Poor Reading Skills Associated with Poor Health," Anne Stapleton, RN, Nursing Monitor, Vol. 98, No. 1, Wake Forest University Baptist Medical Center.

16. "Evaluating and Creating Effective Patient Education Programs," Michael R. Toscani, PharmD, and Richard Patterson online at Medscape (registration and password required).

For additional information

"Health, Communication and Literacy: An Annotated Bibliography," The Centre for Literacy, Montreal, Quebec, Canada.

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