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.
Cancer patients rely on patient education materials (PEMs) to gather information regarding their disease. Patients who are better informed about their illness have better health outcomes. The National Institutes of Health (NIH) recommends that PEMs be written at a sixth- to seventh-grade reading level. The purpose of this study was to evaluate the readability of online PEMs of bone and soft-tissue sarcomas and related conditions.
We identified relevant online PEMs from the following websites: American Academy of Orthopaedic Surgeons, academic training centers, sarcoma specialists, Google search hits, Bonetumor.org, Sarcoma Alliance, Sarcoma Foundation of America, and Medscape. We used 10 different readability instruments to evaluate the reading level of each website’s PEMs.
In assessing 72 websites and 774 articles, we found that none of the websites had a mean readability score at or below 7 (seventh grade). Collectively, all websites had a mean readability score of 11.4, and the range of scores was grade level 8.9 to 15.5.
None of the PEMs in this study of bone and soft-tissue sarcomas and related conditions met the NIH recommendation for PEM reading levels. Concerted efforts to improve the reading level of orthopedic oncologic PEMs are necessary.
The diagnosis of cancer is a life-changing event for the patient as well as the patient’s family, friends, and relatives. Once diagnosed, most cancer patients want more information about their prognosis, future procedures, and/or treatment options.1 Receiving such information has been shown to reduce patient anxiety, increase patient satisfaction with care, and improve self-care.2-6 With the evolution of the Internet, patients in general7-9 and, specifically, cancer patients10-17 have turned to websites and online patient education materials (PEMs) to gather more health information.
For online PEMs to convey health information, their reading level must match the health literacy of the individuals who access them. Health literacy is the ability of an individual to gather and comprehend information about their condition to make the best decisions for their health.18 According to a report by the Institute of Medicine, 90 million American adults cannot properly use the US health care system because they do not possess adequate health literacy.18 Additionally, 36% of adults in the United States have basic or less-than-basic health literacy.19 This is starkly contrasted with the 12% of US adults who have proficient health literacy. A 2012 survey showed that about 31% of individuals who look for health information on the Internet have a high school education or less.8 In order to address the low health literacy of adults, the National Institutes of Health (NIH) has recommended that online PEMs be written at a sixth- to seventh-grade reading level.20
Unfortunately, many online PEMs related to certain cancer21-25 and orthopedic conditions26-31 do not meet NIH recommendations. Only 1 study has specifically looked at PEMs related to an orthopedic cancer condition.32 Lam and colleagues32 evaluated the readability of osteosarcoma PEMs from 56 websites using only 2 readability instruments and identified 86% of the websites as having a greater than eighth-grade reading level. No study has thoroughly assessed the readability of PEMs about bone and soft-tissue sarcomas and related conditions nor has any used 10 different readability instruments. Since each readability instrument has different variables (eg, sentence length, number of paragraphs, or number of complex words), averaging the scores of 10 of these instruments may result in less bias.
The purpose of this study was to evaluate the readability of online PEMs concerning bone and soft-tissue sarcomas and related conditions. The online PEMs came from websites that sarcoma patients may visit to obtain information about their condition. Our hypothesis was that the majority of these online PEMs will have a higher reading level than the NIH recommendations.
Materials and Methods
In May 2013, we identified online PEMs that included background, diagnosis, tests, or treatments for bone and soft-tissue sarcomas and conditions that mimic bone sarcoma. We included articles from the Tumors section of the American Academy of Orthopaedic Surgeons (AAOS) website.33 A second source of online PEMs came from a list of academic training centers created through the American Medical Association’s Fellowship and Residency Electronic Internet Database (FREIDA) with search criteria narrowed to orthopedic surgery. If we did not find PEMs of bone and soft-tissue cancers in the orthopedic department of a given academic training center’s website, we searched its cancer center website. We chose 4 programs with PEMs relevant to bone and soft-tissue sarcomas from each region in FREIDA for a balanced representation, except for the Territory region because it had only 1 academic training center and no relevant PEMs. Specialized websites, including Bonetumor.org, Sarcoma Alliance (Sarcomaalliance.org), and Sarcoma Foundation of America (Curesarcoma.org), were also evaluated. Within the Sarcoma Specialists section of the Sarcoma Alliance website,34 sarcoma specialists who were not identified from the FREIDA search for academic training centers were selected for review.
Because 8 of 10 individuals looking for health information on the Internet start their investigation at search engines, we also looked for PEMs through a Google search (Google.com) of bone cancer, and evaluated the first 10 hits for PEMs.8 Of these 10 hits, 8 had relevant PEMs, which we searched for additional PEMs about bone and soft-tissue cancers and related conditions. We also conducted a Google search of the most common bone sarcoma and soft-tissue sarcoma, osteosarcoma and malignant fibrous histiocytoma, respectively, and found 2 additional websites with relevant PEMs. LaCoursiere and colleagues35 surveyed cancer patients who used the Internet and found that they preferred WebMD (Webmd.com) and Medscape (Medscape.com) as sources for content about their medical condition.35 WebMD had been identified in the Google search, and we gathered the PEMs from Medscape also. It is worth noting that some of these websites are written for patients as well as clinicians.
