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Newark; and 2The College of New Jersey, Ewing, NJ, USA. Abstract ... online resources on peripheral neuropathy are tailored to the general public, particularly.
Journal of the Peripheral Nervous System 18:44–47 (2013)

RESEARCH REPORT

Quality assessment of online patient education resources for peripheral neuropathy David R. Hansberry1 , Ragha Suresh2 , Nitin Agarwal1 , Robert F. Heary1 , and Ira M. Goldstein1 1

Department of Neurological Surgery, New Jersey Medical School, University of Medicine and Dentistry of New Jersey, Newark; and 2 The College of New Jersey, Ewing, NJ, USA

Abstract

Given its practicality, the internet is a primary resource for patients afflicted with diseases like peripheral neuropathy. Therefore, it is important that the readily available online resources on peripheral neuropathy are tailored to the general public, particularly concerning readability. Patient education resources were downloaded from the US National Library of Medicine, Mayo Clinic, National Institute of Neurological Disorders and Stroke, Neuropathy.org, GBS/CIDP Foundation International, Hereditary Neuropathy Foundation, Charcot-Marie-Tooth Association, Foundation for Peripheral Neuropathy, and Neuropathy Action Foundation websites. All patient education material related to peripheral neuropathy was evaluated for its level of readability using the Flesch Reading Ease (FRE) and FleschKincaid Grade Level. The FRE scores averaged 43.4 with only the US National Library of Medicine scoring above 60 (76.5). The Flesch-Kincaid Grade Level scores averaged 11.0. All scores were above a seventh-grade level except the US National Library of Medicine, which had a score of a fifth-grade reading level. Most Americans may not fully benefit from patient education resources concerning peripheral neuropathy education on many of the websites. Only the US National Library of Medicine, which is written at a fifth-grade level, is likely to benefit the average American.

Key words: education, internet, literacy, peripheral neuropathy, readability

Introduction

illness rose by 54%; the number of those who said the internet played a major role as they themselves coped with a major illness increased 40% (Horrigan, 2006). Those who use the internet appreciate the convenience of being able to seek information at any hour, the wealth of information online, and the fact that they can research anonymously (Diaz et al ., 2002). The generally wide accessibility of the internet and its seemingly limitless resources will make it a primary resource for patients and their caregivers when evaluating diseases like peripheral neuropathy (Patel et al ., 2011). Consequently, it is essential that the online information be written at a readability that meets the needs of the average internet user. Medical journalists, health promoters, and web page editors must collaborate to ensure the language

According to data from the Pew Internet and American Life Project, of the 128 million American adults who have internet access, 66% use the internet to search for health and medical information (Horrigan, 2006). The percentage of adults who have accessed the internet to seek medical information has rapidly increased over the last decade, and continues to grow (McMullan, 2006). From 2002 to 2005, the percentage of American adults who said the internet played a major role as they helped another person cope with a major

Address correspondence to: Ira M. Goldstein, MD, New Jersey Medical School, 90 Bergen Street, Suite 8100, PO Box 1709, Newark, NJ 07101-1709, USA. Tel: +(1) 973-972-2334; Fax: +(1) 973-972-2333; E-mail: [email protected] © 2013 Peripheral Nerve Society

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used adequately matches the literacy skills of consumers (Friedman et al ., 2006). A 1992 National Adult Literacy Survey found that approximately 90 million American adults lack the literacy skills to function adequately in our increasingly complex society (Kutner , 2006). The National Institutes of Health recommends that health care material be written at a fourth to sixth-grade reading level to enable more readers to be able to understand the material (National Institutes of Health, 2007). According to the National Cancer Institute, health care material should be written at a reading level two to five grades lower than the highest grade level completed by the intended audience (National Cancer Institute, 2003). Many federal agencies publish material written at a tenth-grade level; however, it is currently believed that the average American adult reads at the seventhgrade level (National Cancer Institute, 2003). George Klare defines the readability of a text as ‘‘the ease of understanding or comprehension due to the style of writing’’ (DuBay , 2004). The goal of health writers is to keep the target audience in mind and write at the appropriate readability. The Flesch Reading Ease (FRE) formula and FleschKincaid Grade Level (FKGL) formula are frequently used tools for assessing the readability of written materials (DuBay , 2004). Higher FRE scores (on a scale from 0 to 100) indicate material that is easier to read; lower numbers mark passages that are more difficult to read. The FKGL of a text indicates the academic grade a person must have completed in order to read and comprehend the material ( Flesch, 1948 ; 1979a; Walsh and Volsko, 2008). Previous studies have been conducted evaluating the readability of patient education material. Friedman et al. ( 2006) determined a mean FRE score of 43.5 (considered difficult) and a mean FKGL score of 12.9 when evaluating internet material on breast, prostate, and colorectal cancer. Badarudeen and Sabharwal ( 2008) indicate that only 2% of the material available on the websites of the American Academy of Orthopaedic Surgeons (AAOS) and Pediatric Orthopaedic Society of North America was written at the recommended sixth-grade level. Only 2.5% of the spine-related patient education materials available at AAOS, North American Spine Association, American Association of Neurological Surgeons, and practice-based websites were written at the recommended readability level for American adults based on FKGL score (Vives et al ., 2009). A study analyzing the material available to the public regarding H1N1 on the website for the Centers for Disease Control and Prevention determined a range of FKGL scores from 9.26 to 13.9, indicating that the material is far too advanced for the average American adult (Hoppe, 2010).

Health literacy is defined as the ‘‘capacity to obtain, interpret, and understand basic health information and services and the competence to use such information and services to enhance health’’ (Lauder , 2008). The disjunction between what the health care industry produces and the health literacy of the average American leaves many Americans unable to read and understand their health care information (Kutner , 2006). When consumers cannot understand health care information, mistakes happen and people can get hurt (Peterson et al ., 2011). However, effective communication lowers patient anxiety and can improve clinical outcome (Perks et al ., 2009). The aim of this study is to examine the readability of online resources for patients pertaining to peripheral neuropathy from the US National Library of Medicine, the Mayo Clinic, National Institute of Neurological Disorders and Stroke (NINDS), Neuropathy.org, GBS/ CIDP Foundation International (GBS/CIDP FI), Hereditary Neuropathy Foundation (HNF), Charcot-MarieTooth Association (CMTA), Foundation for Peripheral Neuropathy (FPN), and the Neuropathy Action Foundation (NAF) and to determine if the material is suitable for the average American adult to comprehend.

Materials and Methods In November 2012, patient education resources specifically written for and available to the public were acquired online from the US National Library of Medicine, Mayo Clinic, NINDS, Neuropathy.org, GBS/CIDP FI, HNF, CMTA, FPN, and NAF websites. For each website, all educational resources related to peripheral neuropathy were downloaded and combined into a Microsoft Office Word document. Text unrelated to the patient education material was excluded, including copyright notices, disclaimers, author information, hyperlinks, tables, and figures. The level of readability was analyzed with two frequently used assessment scales. This includes the FRE (Equation 1) and FKGL (Equation 2). The FRE was employed to evaluate readability on a 0–100 scale. Scores of 0–30 correspond to Very Difficult , 30–50 are Difficult , 50–60 are Fairly Difficult , 60–70 are Standard , 70–80 are Fairly Easy , 80–90 are Easy , and 90–100 are Very Easy . This system of evaluation yields scores based on the calculation used in Equation 1 ( Flesch, 1948 ; 1979b). FRE : 206.835−(1.015×average no. of words per sentence) − (84.6×average no. of syllables per word) (1) 45

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Journal of the Peripheral Nervous System 18:44–47 (2013)

FKGL : (0.39 × average no. of words per sentence)

Table 1. Online patient education resources: FRE (Flesch Reading Ease) and FKGL (Flesch-Kincaid Grade Level).

+ (11.8 × average no. of syllables per word) − 15.59 (2)

Results The FRE scores (Table 1) for the US National Library of Medicine, Mayo Clinic, NINDS Fact Sheet, NINDS Peripheral Neuropathy Information Page, Neuropathy.org, GBS/CIDP FI, HNF, CMTA, FPN, and NAF websites were 76.5, 47.3, 26.0, 15.5, 35.8, 46.2, 58.8, 44.7, 44.8, and 38.7, respectively. Overall, they had an average FRE score of 43.4 with a SD of 16.7. The FKGL scores (Table 1) for the US National Library of Medicine, Mayo Clinic, NINDS Fact Sheet, NINDS Peripheral Neuropathy Information page, Neuropathy.org, GBS/CIDP FI, HNF, CMTA, FPN, and NAF websites were 5.0, 9.6, 14.4, 15.9, 11.5, 10.9, 8.0, 11.9, 11.0, and 11.3, respectively. Collectively, they had an average FKGL score of 11.0 with a SD of 3.0.

Website

FRE

FKGL

US National Library of Medicine Mayo Clinic National Institute of Neurological Disorders and Stroke – fact sheet National Institute of Neurological Disorders and Stroke – peripheral neuropathy information page Neuropathy.org GBS/CIDP Foundation International Hereditary Neuropathy Foundation Charcot-Marie-Tooth Association Foundation for Peripheral Neuropathy Neuropathy Action Foundation

76.5

5

47.3 26

9.6 14.4

15.5

15.9

35.8 46.2

11.5 10.9

58.8

8

44.7

11.9

44.8

11

38.7

11.3

( 2009). In the same study, evidence supporting a positive correlation between anxiety level and need for information was found. This suggests that effective communication of information could lower patient anxiety, thereby improving clinical outcome and overall patient well-being. In this era, the general public often refers to the internet for information to broaden their understanding of disease processes and to research treatment opinions that influence health care decisions (Walsh and Volsko, 2008). According to data from the Pew Internet and American Life Project, approximately 84 million American adults use the internet to search for health and medical information (Horrigan, 2006). Although many internet resources can be beneficial, they are advantageous only if the consumer is capable of comprehending them (Walsh and Volsko, 2008). For the most part, the online patient education materials on peripheral neuropathy under consideration in this study are written at a reading level incomprehensible to the average American adult. Prior studies concerning readability have also found the language written at a level that the average American cannot comprehend with low FRE scores and high FKGL scores (Friedman et al ., 2006 ; Badarudeen and Sabharwal , 2008 ; Vives et al ., 2009 ; Hoppe, 2010). A potential limitation of the study is the inherent polysyllabic nature of medical jargon concerning peripheral neuropathy, which contributes to a high FRE score. If a patient is somewhat educated about a condition that they are afflicted with, the

Discussion Of all the websites on peripheral neuropathy analyzed, the only website written below the seventhgrade reading level, and therefore likely to be understood by the average American adult, was from the US National Library of Medicine website. The FKGL score for the US National Library of Medicine website was a 5.0. The average American is not likely to fully benefit from the patient education material on peripheral neuropathy available online from the Mayo Clinic, NINDS Stroke Fact Sheet, NINDS Peripheral Neuropathy Information page, Neuropathy.org, GBS/CIDP FI, HNF, CMTA, FPN, or NAF websites because all FKGL scores of these publications were found to be above the ninth-grade reading level. In fact, the NINDS Peripheral Neuropathy Information page and Neuropathy.org had scores above 14, which would be considered appropriate reading for someone who is college educated. Overall, the average FKGL score for all websites was determined to be 11.0, a value considerably higher than the recommended seventh-grade benchmark. The average Flesh Reading Ease score was 43.4, which is considered difficult . Only the US National Library of Medicine received a FRE score >60. Its score of 76.5 is considered to be a fairly easy read, which would be more suitable for the average American. The incidence of preoperative anxiety among patients scheduled for neurosurgery was determined to be as high at 89% in a study by Perks et al. 46

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Flesch R (1979a). How to write plain English: a book for lawyers and consumers. Harper & Row, New York. Flesch R (1979b). How to Write Plain English: A Book for Lawyers and Consumers. Harper & Row, New York, p 126 pp xiii. Friedman DB, Hoffman-Goetz L, Arocha JF (2006). Health literacy and the world wide web: comparing the readability of leading incident cancers on the Internet. Med Inform Internet Med 31:67–87. Hoppe IC (2010). Readability of H1N1 information from the CDC Web site. Pediatr Infect Dis J 29:479. Horrigan J (2006). The internet’s growing role in life’s major moments. http://www.pewinternet.org/Reports/2006/TheInternets-Growing-Role-in-Lifes-Major-Moments.aspx. Kutner M, Greenberg E, Jin Y, Paulsen C (2006). The health literacy of America’s adults: results from the 2003 National Assessment of Adult Literacy. http://nces.ed.gov/ pubsearch/pubsinfo.asp?pubid=2006483. Lauder B, Gabel-Jorgensen N (2008). Recent research on health literacy, medication adherence, and patient outcomes. Home Health Nurse 26:5. McMullan M (2006). Patients using the Internet to obtain health information: how this affects the patient-health professional relationship. Patient Educ Couns 63:24–28. National Cancer Institute (2003). Clear & simple: developing effective print materials for low-literate readers. http://www. cancer.gov/cancertopics/cancerlibrary/clear-and-simple/ page1. National Institutes of Health (2007). How to write easy to read health materials. http://www.nlm.nih.gov/ medlineplus/etr.html. Patel PP, Hoppe IC, Ahuja NK, Ciminello FS (2011). Analysis of comprehensibility of patient information regarding complex craniofacial conditions. J Craniofac Surg 22:1179–1182. Perks A, Chakravarti S, Manninen P (2009). Preoperative anxiety in neurosurgical patients. J Neurosurg Anesthesiol 21:127–130. Peterson PN, Shetterly SM, Clarke CL, Bekelman DB, Chan PS, Allen LA, Matlock DD, Magid DJ, Masoudi FA (2011). Health literacy and outcomes among patients with heart failure. JAMA 305:1695–1701. Vives M, Young L, Sabharwal S (2009). Readability of spinerelated patient education materials from subspecialty organization and spine practitioner websites. Spine 34:2826–2831. Walsh TM, Volsko TA (2008). Readability assessment of internet-based consumer health information. Respir Care 53:1310–1315.

high FRE score may underestimate their degree of comprehension. Therefore, further comprehension assessments should be conducted. Another logical next step would be to determine if diagrams, visual aids, or other multimedia resources facilitate an understanding of the written text.

Conclusion Current online patient education material concerning peripheral neuropathy is well above the recommended seventh-grade reading level. The average American is not likely to fully benefit from information available online from the Mayo Clinic, NINDS Stroke Fact Sheet, NINDS Peripheral Neuropathy Information page, Neuropathy.org, GBS/CIDP FI, HNF, CMTA, FPN, or NAF websites. Only the US National Library of Medicine provides educational material written below the seventh-grade level benchmark. Given the low literacy level of the average American, healthoriented education material should be tailored to meet the patient’s abilities. It would be beneficial for the aforementioned websites to revise their content to make it accessible to the general public. To optimize information gain from online resources, professional and government groups should keep the average patient’s capabilities in mind when writing educational resources.

References Badarudeen S, Sabharwal S (2008). Readability of patient education materials from the American Academy of Orthopaedic Surgeons and Pediatric Orthopaedic Society of North America web sites. J Bone Joint Surg Am 90:199–204. Diaz JA, Griffith RA, Ng JJ, Reinert SE, Friedmann PD, Moulton AW (2002). Patients’ use of the Internet for medical information. J Gen Intern Med 17:180–185. DuBay WH (2004). The Principles of Readability. Impact Information, Costa Mesa. Flesch R (1948). A new readability yardstick. J Appl Psychol 32:221–233.

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