Orthopedics

Feature Article Supplemental Data

Evaluating the Readability of Online Patient Education Materials Related to Orthopedic Oncology

Ashok Para, BA; Franklin Thelmo, BS; Nicole D. Rynecki, BA; Brandon Zelman, BA; Raghav Gupta, BS; Daniel Coban, BA; Varun Ayyaswami, BS; Arpan V. Prabhu, MD; Joseph A. Ippolito, MD; Nitin Agarwal, MD; Justin M. Moore, MD, PhD; Kathleen S. Beebe, MD

Abstract

The internet is increasingly used to access patient education materials. The average American reading level has been found to be that of a 7th- to 8th-grade student, prompting the National Institutes of Health (NIH) and the American Medical Association (AMA) to advise that patient education materials be written between the 4th- to 6th-grade reading level. The purpose of this study was to evaluate the reading level of current patient education materials for the most common musculoskeletal oncological tumors. A Google search was performed with all location filters off to account for geographic variability for patient education materials related to 28 orthopedic primary or secondary tumors. All patient education articles from the first 10 website hits for each tumor type were analyzed. Patient education materials from these websites were evaluated using 8 validated readability scales. Patient resources were found to be written at an average grade level nearly double the NIH and AMA recommendation. Patient education materials for soft tissue chondromas were written at the highest level (14.8±1.9), whereas education materials for chordomas (10.1±1.0) most closely approached national recommendations, despite still being written at a readability level nearly 4 grade levels higher than has been recommended. The Flesch Reading Ease assessment provided a mean score of 46.5±7.7, corresponding with a “difficult to read” result. Current patient education materials regarding oncological musculoskeletal-related patient education materials are written significantly above the recommended reading level. Further modification of these resources is warranted to ensure adequate comprehension and informed decision making in the clinical setting. [Orthopedics. 2021;44(1):38–42.]

Abstract

The internet is increasingly used to access patient education materials. The average American reading level has been found to be that of a 7th- to 8th-grade student, prompting the National Institutes of Health (NIH) and the American Medical Association (AMA) to advise that patient education materials be written between the 4th- to 6th-grade reading level. The purpose of this study was to evaluate the reading level of current patient education materials for the most common musculoskeletal oncological tumors. A Google search was performed with all location filters off to account for geographic variability for patient education materials related to 28 orthopedic primary or secondary tumors. All patient education articles from the first 10 website hits for each tumor type were analyzed. Patient education materials from these websites were evaluated using 8 validated readability scales. Patient resources were found to be written at an average grade level nearly double the NIH and AMA recommendation. Patient education materials for soft tissue chondromas were written at the highest level (14.8±1.9), whereas education materials for chordomas (10.1±1.0) most closely approached national recommendations, despite still being written at a readability level nearly 4 grade levels higher than has been recommended. The Flesch Reading Ease assessment provided a mean score of 46.5±7.7, corresponding with a “difficult to read” result. Current patient education materials regarding oncological musculoskeletal-related patient education materials are written significantly above the recommended reading level. Further modification of these resources is warranted to ensure adequate comprehension and informed decision making in the clinical setting. [Orthopedics. 2021;44(1):38–42.]

Educational materials available through the internet have become an increasingly popular resource for patients to learn about their medical conditions.1 In 2009, a survey conducted by the Pew Research Center reported that 61% of adults use the internet regularly to obtain health care information.2 To meet this demand and aid in informed decision making, providers, national academies, and specialty societies have begun providing online education materials for patients. Although the electronic availability of these materials should equate with increased health literacy nationwide, this correlation has yet to be established. In fact, previous studies across a variety of specialties indicate that there is a mismatch between the comprehension level of patients and the level at which patient education materials are currently written.3–11

Given that health outcomes are intimately tied to health literacy, it is critical that the readability level of patient education materials is in accordance with national guidelines to meet the needs of the average patient.12 The National Assessment of Adult Literacy, released in 2006 by the US Department of Education, found that only 12% of consumers have proficient health literacy skills. Moreover, the US population, on average, can read at the level of a 7th- or 8th-grade student. As a result, the National Institutes of Health (NIH) and the American Medical Association (AMA) recommend that patient education materials be written between the 4th- to 6th-grade reading level.13,14

The purpose of this study was to determine the readability of patient education materials for musculoskeletal oncologic conditions. These conditions are rare, with an incidence of 0.9 per 100,000 per year in the United States.15 The readability of patient education materials has been examined across numerous orthopedic specialties, finding materials to be written at a grade level significantly higher than that of the average patient.12,16–23 Patient education materials from the American Academy of Orthopaedic Surgeons (AAOS) related to orthopedic oncology are limited.24,25 As a result, many of the available materials in this specialty come from a variety of sources. The authors hypothesized that educational materials available online that relate to bone and soft tissue tumors would be written at a considerably higher literacy level.

Materials and Methods

Data on 28 preselected orthopedic oncology conditions were obtained. Patient education materials from the first 10 websites pertaining to each of these conditions were selected for analysis. The websites were identified using the Google search engine without any preset exclusion criteria. In total, patient education materials from 240 (85.7%) websites were obtained with the initial desired total of 280 being unachieved due to articles failing to meet selection criteria. Articles were ineligible to be recorded for analysis due to 1 or more of the following reasons: (1) the article was written by a source including Wikipedia or other reference website from which authorship was a collaboration of anonymous users citing various other sources, thus making true authorship impossible to ascertain; (2) the search term yielded articles that were specifically designed for nonpatient audiences, including medical students, physicians, physician assistants, nurse practitioners, nurses, hospital administrators, or researchers; (3) the indexed sites led to pages that were not text based; (4) the indexed site led to a medical dictionary; and (5) the indexed site was an entry into an academic journal article that was not designed for patient education. Once selected, all articles were saved as Word (Microsoft Corp) documents, as text-based–only entries. These documents were then analyzed using readability assessment scales via the Readability Studio software (Oleander Software Solutions).

Results

The patient education materials were evaluated using the Coleman-Liau,26 Flesch-Kincaid,27 FORCAST,28 Fry,29 Gunning Fog,30 Raygor Estimate,31 and SMOG32 assessment scales (Table A, available in the online version of the article). According to these scales, the mean±SD reading levels (grade levels) of all articles were 11.76±1.27, 10.7±1.19, 11.22±0.43, 13.07±2.21, 12.31±1.08, 11.58±2.00, and 12.97±1.85, respectively (Table B, available in the online version of the article). Across all 7 of these scales, the mean grade level of these patient resources was found to be written at a level nearly double the NIH and AMA recommendation: 11.9±0.6. Materials for soft tissue chondromas were written at the highest level (14.8±1.9), and those for chordomas (10.1±1.0) most closely approached national recommendations. However, these were still written at a readability level more than 4 grade levels higher than has been recommended by the NIH and AMA. The materials were also analyzed with the Flesch Reading Ease assessment, which is scored out of 100, with lower numbers indicating more complex texts. This scale provided a mean score of 46.5±7.7, which corresponds to a “difficult to read” result, indicating a mid-college level of education or higher to understand the text (Figure 1).

Readability Assessment Scales

Table A:

Readability Assessment Scales

Readability Scores of Online Patient Education Materials for Benign, Malignant, and Metastatic Bone Tumors

Table B:

Readability Scores of Online Patient Education Materials for Benign, Malignant, and Metastatic Bone Tumors

Comparison of mean readability of benign, malignant, and metastatic bone tumors. Mean readability derived from Coleman-Liau,26 Flesch-Kincaid,27 FORCAST,28 Fry,29 Gunning Fog,30 Raygor Estimate,31 and SMOG32 assessment scales. The national recommendation is at or below a 6th-grade reading level (horizontal line).

Figure 1:

Comparison of mean readability of benign, malignant, and metastatic bone tumors. Mean readability derived from Coleman-Liau,26 Flesch-Kincaid,27 FORCAST,28 Fry,29 Gunning Fog,30 Raygor Estimate,31 and SMOG32 assessment scales. The national recommendation is at or below a 6th-grade reading level (horizontal line).

Discussion

According to the National Adult Literacy Survey, nearly half of the US population is either functionally illiterate or marginally illiterate. Functionally illiterate is defined as having the ability to read at a 5th-grade reading level or lower, whereas marginally illiterate is defined as having the ability to read between a 6th- and 8th-grade reading level.33 Health literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.12 Low health literacy hinders a person's ability to locate health care services and self-manage acute and chronic health conditions. In fact, health literacy has been touted as the single best predictor of health care status.12

The objective of this study was to examine the readability of patient education materials for the most common orthopedic oncology conditions, which has never been previously assessed. This analysis revealed that patients had to have a 12th-grade education to fully comprehend the majority of materials from these websites. This is approximately double the NIH and AMA recommendations. None of the patient education materials for any single condition were written at an average at or below the 6th-grade reading level. Given patients' reliance on these materials within the clinical setting, further modification of these resources is warranted to ensure adequate comprehension and informed decision making.

The results of this study are consistent with existing literature examining patient education materials in orthopedic oncology. Based on a previous analysis conducted by Shah et al,24 patient education materials provided by the AAOS, American Cancer Society, Bone and Cancer Foundation, and National Cancer Institute were written at a 10th-grade reading level on average, with the Bone and Cancer Foundation materials exceeding an 11th-grade reading level. Although prior analyses of patient education material readability in orthopedic oncology are scant, this trend is present among other subspecialties in orthopedics, including, but not limited to, sports medicine, arthroplasty, trauma, hand, and arthroscopy.18,24,34–36

Improvements in readability of patient education materials will allow patients to have a better understanding of their conditions and risks of various treatments and procedures. It will also decrease the likelihood of medical malpractice claims, because patients will be better informed regarding their health care decisions.33 The readability of these materials can be improved in several ways. The readability scales used in this study were created based on algorithms that analyze word complexity, sentence structure, and length. Avoiding the use of polysyllabic words is essential to improve readability. Although the authors acknowledge that the majority of these conditions have polysyllabic names, which will therefore unavoidably increase the reading level, they are doubtful that these names can fully account for a reading level nearly twice that of the national recommendation. Other techniques for compensating for these polysyllabic names include using simple, concise sentences and avoiding the use of medical jargon. Additionally, using visual aids such as charts, graphs, and illustrations can supplement the textual information to make the materials more coherent.33 These tactics have been previously supported in the development of medicinal package leaflets as well as in other specialties.37

Although this analysis highlights an incongruity between efforts to educate patients and the materials used to do so, there are certain limitations to this study. First, many patients used websites that did not meet the inclusion criteria for this analysis. Analyses in other specialties found that information on Wikipedia may sometimes be superior to professional organization websites.38 In fact, it is one of the most frequently used medical resources globally.39 To the authors' knowledge, no study has broadly examined the readability of information available on Wikipedia relating to orthopedic oncology. One study conducted by Leithner et al40 examined completeness and validity of the material on Wikipedia and found that it was inferior to the US National Cancer Institute. However, they did not use the readability scales used in the current study, which leaves the authors with a direction for future research. Finally, due to the nature of this study, there is a demographic sampling bias in that it only includes patients who have access to a computer. Health literacy is associated with socioeconomic status to some degree, and it is therefore possible to argue that the baseline literacy of patients with regular internet access is greater than that of the general US population. Therefore, the functionally illiterate and marginally illiterate may be underrepresented in interpreting these data.

Conclusion

Ensuring that patients with musculoskeletal oncologic conditions are well informed is critical to helping improve surgical, medical, and mental health outcomes. Due to increasing patient reliance on the internet as a resource to learn about their health, the authors assessed the readability of patient education materials in orthopedic oncology. Currently, the average readability of patient education materials is at nearly a 12th-grade reading level, compared with the 6th- to 8th-grade level readability recommended by the AMA and NIH. The hope of the authors is that this investigation prompts clinicians and associated institutions to revise online patient educations materials to facilitate more widespread understanding of bone and soft tissue cancers for patients and family members.

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Readability Assessment Scales

Readability Assessment ScaleAlgorithm*
Flesch-Kincaid(0.39 x A) + (11.8 x B) – 15.59
Coleman-Liau((0.0588 x C) – (0.296 x D)) – 15.8
Gunning Fog0.4 x ((B ÷ E) + 100 (H ÷ B))
Raygor Estimate100-word passage selected from sample No. of sentences calculated No. of words with ≥6 letters calculated Readability calculated using variables
FORCAST20- (F ÷ 10)
Fry100-word passage selected from sample No. of sentences calculated No. of syllables calculated Readability calculated using variables
Flesch Reading Ease206.835 – ((1.015 x A) – (84.6 x B))
SMOG1.043 x √ (G x (30/E)) + 3.1291

Readability Scores of Online Patient Education Materials for Benign, Malignant, and Metastatic Bone Tumors

TumorColeman-LiauFlesch-KincaidForcastFryGunning FogRaygor EstimateSmogFlesh Reading EaseAvg.Std. Dev.
Bone Tumor10.329.0011.0011.0010.4510.2921.3656.8011.924.22
Chondroblastoma12.4110.7711.0213.0012.1210.7812.9147.2011.860.99
Chondromyxoid Fibroma10.6210.0411.0811.6711.6610.2512.3652.0011.100.85
Chondrosarcoma12.6311.0211.2814.2912.5411.8912.9043.7012.361.10
Chordoma10.008.6010.7510.0010.759.0011.3557.5010.060.99
Enchondroma12.5411.2611.5115.2013.3711.8813.2841.3012.721.37
Ewing Sarcoma10.639.8211.0912.1011.3810.6712.0753.2011.110.82
Extra-abdominal Desmoid13.6113.3012.2816.5014.0816.2014.1832.8814.311.53
Fibrous Dysplasia12.7911.2511.6214.5713.2113.4313.3441.6012.891.14
Giant Cell Tumor11.2210.5811.2211.7812.1410.4412.5849.6011.420.79
Hemangioma11.9510.9611.0715.5712.8011.2912.7143.3012.341.61
Leukemia11.9210.3111.3214.4011.9011.8012.0545.9011.961.23
Lipoma9.729.0711.179.7511.8010.0011.7954.3010.471.10
Metastatic11.9010.8211.1012.8812.6413.0012.6648.1012.140.88
Multiple Myeloma12.8511.5911.4613.8613.3213.5713.6443.1012.900.99
Non-ossifying Fibroma11.1010.1711.0912.0012.1310.6012.1149.1011.310.78
Osteoblastoma13.1712.0111.5415.6712.9311.5013.1036.4012.851.44
Osteochondroma11.5610.8910.6814.8311.8210.4412.4846.7011.811.51
Osteofibrous Dysplasia12.6012.0311.9013.0013.4710.0012.6736.3012.241.12
Osteoid Osteoma11.7711.2711.3614.0012.6212.2013.1843.2012.341.00
Osteosarcoma10.9410.3110.8512.0011.7310.2012.0249.6011.150.77
Paget disease10.598.8310.8810.4410.3812.4311.1058.0010.661.07
Pigmented Villonodular Synovitis11.069.8910.9311.2811.229.5011.9650.7010.830.85
Primary Bone Lymphoma11.009.9811.1510.0011.589.6711.7350.7510.730.83
Soft Tissue Chondroma14.9013.0012.0017.0014.7517.0014.7531.0014.771.86
Soft Tissue Sarcoma11.3110.5311.0612.2212.0911.7812.6249.7011.660.73
Synovial Chondromatosis13.9812.6111.7117.0014.0515.0014.0232.8014.051.69
Unicameral Bone Cyst10.269.8010.1510.0011.729.3312.0256.4010.471.01
MEAN11.7610.711.2213.0712.3111.5812.9646.4711.940.88
SD1.271.190.432.211.082.001.857.651.430.62
Authors

The authors are from the Department of Orthopaedic Surgery (AP, NDR, DC, JAI, KSB) and the Department of Neurological Surgery (RG), Rutgers New Jersey Medical School, Newark, New Jersey; Philadelphia College of Osteopathic Medicine (FT, BZ), Philadelphia, the Department of Radiation Oncology (AVP), University of Pittsburgh School of Medicine/UPMC Hillman Cancer Center, Pittsburgh, and the Department of Neurosurgery (NA), University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania; the University of Maryland School of Medicine (VA), Baltimore, Maryland; and the Neurosurgical Service (JMM), Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, Massachusetts.

The authors have no relevant financial relationships to disclose.

Correspondence should be addressed to: Ashok Para, BA, Department of Orthopaedic Surgery, Rutgers New Jersey Medical School, 140 Bergen St, ACC D1610, Newark, NJ 07103 ( ashokpara@gmail.com).

Received: October 03, 2019
Accepted: January 20, 2020
Posted Online: November 03, 2020

10.3928/01477447-20201012-04

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