Shaan S. Patel, BA, Evan D. Sheppard, MD, Herrick J. Siegel, MD, and Brent A. Ponce, MD
Authors’ Disclosure Statement: Dr. Siegel wishes to report that he has received consulting fees and/or honoraria from Stryker and from Corin. He also reports that he is a paid consultant to Stryker and Corin; has received payment for lectures, including service on speakers bureaus, from Stryker, Corin, and Stanmore; has received payment for development of educational presentations from Stryker and from Corin; and has received money for travel/accommodations/meeting expenses from Stryker. Dr. Ponce wishes to report that he is a paid consultant to Acumed and Tornier; has received payment for lectures, including service on the speakers bureau, from Tornier; has received payment for development of educational presentations on shoulder arthroplasty from Tornier; and his institution has received a grant from Acumed. The other authors report no actual or potential conflict of interest in relation to this article.
This study comprehensively evaluated the readability of online PEMs of bone and soft-tissue sarcomas and related conditions by using 10 different readability instruments. After identifying 72 websites and 774 articles, we found that all 72 websites’ PEMs had a mean readability score that did not meet the NIH recommendation of writing PEMs at a sixth- to seventh-grade reading level. These results are consistent with studies evaluating the readability of online PEMs related to other cancer conditions21-25 and other orthopedic conditions.26-31
The combination of low health literacy of many US adults and high reading grade levels of the majority of online PEMs is not conducive to patients’ better understanding their condition(s). Even individuals with high reading skills prefer information that is simpler to read.48 In many areas of medicine, there is evidence that patients’ understanding of their condition has a positive impact on health outcomes, well-being, and the patient–physician relationship.49-61 Regarding cancer patients, Davis and colleagues54 and Peterson and colleagues57 showed that lower health literacy contributes to less knowledge and lower rates of breast54 and colorectal cancer57 screening tests. Even low health literacy of family caregivers of cancer patients can result in increased stress and lack of communication of important medical information between caregiver and physician.52 Among cancer patients, poor health literacy has been associated with mental distress60 as well as decreased compliance with treatment and lower involvement in clinical trials.55
The disparity between patients’ health literacy and the readability of online PEMs needs to be addressed by finding methods to improve patients’ understanding of their condition and to lower the readability scores of online PEMs. Better communication between patient and physician may improve patients’ comprehension of their condition and different aspects of their care.59,62-66 Doak and colleagues63 recommend giving cancer patients the most important information first; presenting information to patients in smaller doses; intermittently asking patients questions; and incorporating graphs, tables, and drawings into communication with patients.63 Additionally, allowing patients to repeat information they have just received/heard to the physician is another useful tool to improve patient education.62,64-66
Another way to address the disparity between patients’ health literacy and the readability of online PEMs is to reduce the reading grade level of existing PEMs. According to results from this study and others, the majority of online PEMs are above the reading grade level of a significant number of US adults. Many available and inexpensive readability instruments allow authors to assess their articles’ readability. Many writing guidelines also exist to help authors improve the readability of their PEMs.20,64,67-71 Living Word Vocabulary70 and Plain Language71 help authors replace complex words or medical terms with simpler words.29 Visual aids, audio, and video help patients with low health literacy remember the information.64
Efforts to improve PEM readability are effective. Of all the websites reviewed, VUMC was identified as having PEMs with the lowest readability score (5.3). This score was reported by the New Fog Count readability instrument, which accounts for the number of sentences, easy words, and hard words. In 2011, VUMC formed the Department of Patient Education to review and update its online and printed PEMs to make sure patients could read them.72 Additionally, the mean readability scores of the websites of the National Cancer Institute and MedlinePlus are in the top 50% of the websites included in this study. The NIH sponsors both sites, which follow the NIH guidelines for writing online PEMs at a reading level suitable for individuals with lower health literacy.20 These materials serve as potential models to improve the readability of PEMs, and, thus, help patients to better understand their condition, medical procedures, and/or treatment options.
To illustrate ways to improve the reading grade level of PEMs, we used the article “Ewing’s Sarcoma” from the AAOS website73 and followed the NIH guidelines to improve the reading grade level of the article.20 We identified complex words and defined them at an eighth-grade reading level. If that word was mentioned later in the article, simpler terminology was used instead of the initial complex word. For example, Ewing’s sarcoma was defined early and then referred to as bone tumor later in the article. We also identified every word that was 3 syllables or longer and used Microsoft Word’s thesaurus to replace those words with ones that were less than 3 syllables. Lastly, all sentences longer than 15 words were rewritten to be less than 15 words. After making these 3 changes to the article, the mean reading grade level dropped from 11.2 to 7.3.
This study has limitations. First, some readability instruments evaluate the number of syllables per word or polysyllabic words as part of their formula and, thus, can underestimate or overestimate the reading grade level of a document. Some readability formulas consider medical terms such as ulna, femur, or carpal as “easy” words because they have 2 syllables, but many laypersons may not comprehend these words. On the other hand, some readability formulas consider medical terms such as medications, diagnosis, or radiation as “hard” words because they contain 3 or more syllables, but the majority of laypersons likely comprehend these words. Second, the reading level of the patient population accessing those online sites was not assessed. Third, the readability instruments in this study did not evaluate the accuracy of the content, pictures, or tables of the PEMs. However, using 10 readability instruments allowed evaluation of many different readability aspects of the text. Fourth, because some websites identified in this study, such as Bonetumor.org, were written for patients as well as clinicians, the reading grade level of these sites may be higher than that of those sites written just for patients.
