Bullous Pemphigoid: Readability, Quality, and Treatments of Online Health Resources

Abstract

Dear Editor, Bullous pemphigoid (BP) is an autoimmune blistering disease that disproportionately affects the elderly,1 a population in which limited health literacy is a known barrier to health outcomes. The 2003 National Assessment of Adult Literacy survey found that among patients older than 65, 59% had “basic” or “below basic” literacy, and only 3% were “proficient.”2 Despite increased utilization of the internet to seek health information, including among the elderly,3 the accessibility of online BP resources remain unknown. Herein, we examine the readability and quality of online resources on BP. “Bullous pemphigoid” was searched on Google, Yahoo, and Bing on February 5, 2020. The first 50 results from each site were evaluated. Sites that were duplicates, blogs, subscription-based, intended for physicians, or unrelated to BP were excluded. Readability was assessed using six validated readability scales (Flesch Reading Ease, Flesch-Kincaid Grade Level, Gunning-Fog Index, SMOG Index, Coleman-Liau Index, Automated Readability). Quality was assessed with JAMA Benchmark and Discern Instrument. Two reviewers independently used the modified Discern Instrument4; discrepancies within two points were averaged, and discrepancies greater than two points were discussed to consensus. Articles authored by dermatologists were compared to those by non-dermatologists, and differences between average readability and Discern score were assessed using t-test. Individual treatments discussed on each site were tabulated. Of 150 websites reviewed, 24 met inclusion criteria (Table 1). The average grade level was 11.9 (range 6.7-15.3), exceeding the 6th grade level recommended by American Medical Association. The majority (21/24, 87.5%) of websites were rated as “fair” or less than “fair” using the Discern Instrument. The resources with the highest quality per Discern Instrument (patient info, 55.5 and National Organization for Rare Disorders, 54) had average grade levels of 9.8 and 13.3, respectively. Only a third of the websites met all four criteria of the JAMA Benchmark. In comparing articles written by dermatologists versus nondermatologists, there was no significant difference in average grade level (12 vs. 12, P = 0.87) or quality of content per Discern score (41 vs. 40, P = 0.88). The most commonly discussed treatments included systemic steroids (95.8% of websites), topical steroids (87.5%), steroid-sparing traditional immunosuppressants (83.3%), and oral antibiotics (79.2%). Biologics (41.7%) and oral nicotinamide (29.2%) were less frequently discussed. Only four websites comprehensively discussed all main treatment modalities for BP, including topical steroids, systemic steroids, oral nicotinamide, oral antibiotics, steroid-sparing traditional immunosuppressants, and biologics. More recent treatment developments were not included: omalizumab was discussed in 8.3% of the websites despite increasing evidence for its efficacy.5 Online health resources for BP fail to meet recommended reading levels. Quality of websites were variable: nearly half did not cite authorship and only a sixth comprehensively discussed treatment modalities. The difficult readability of online BP resources has been similarly identified in readability studies on other dermatologic topics.6 Notably, although a prior study examining epidermolysis bullosa online resources reported dermatologist-created resources to be less readable,7 our study found no difference in readability or quality of online BP resources authored by dermatologists versus non-dermatologists. However, the average dermatologist-authored BP article still required a 12th grade reading level. BP disproportionately affects the elderly, a population in which health literacy has been identified as a barrier to improved health outcomes. Given the prevalence of BP in the elderly, internet access and utilization may already be limited in this patient population. Inappropriately high readability levels of online resources can further pose a secondary barrier to health information access. Even for patients with proficient health literacy, the majority of sites do not discuss all treatment modalities. Our data highlights the difficult readability and limited quality of online BP resources, which represent significant impediments to care. Improving online BP resources will increase patients' access to and understanding of health information. Dermatologists should take an active role in vetting online resources for their patients and when contributing to online content, should prioritize readability and accessibility. Table 1 - Most searched bullous pemphigoid educational website characteristics (n = 24). Website name Readability grade level* Website characteristics Number, n (%) Saint Luke's 6.7 Author name provided 13 (54.2) WebMD 8.9 Author degree (n = 13): MD/ MD+PhD/ Other 12 (92.3)/ 1 (7.7)/ 4 (30.8) Cleveland Clinic 9.0 Author is a dermatologist (n = 13) 8 (61.5) Patient Info 9.8 Year written/modified was noted 18 (75.0) Journal of the American Medical Association 10.0 Overall website readability and quality scores† Mean ± SD (range) Penn Medicine 10.9 Flesch Kincaid Reading Ease 46.6 ± 14.5 (12.0-76.9) American Osteopathic College of Dermatology 11.1 Flesch Kincaid Grade Level 10.8 ± 2.4 (5.1-15.0) Medline Plus 11.1 Gunning Fog Score 13.2 ± 2.7 (6.7-18.0) Mount Sinai 11.1 SMOG Index 9.9 ± 1.9 (5.2-13.6) NHS UK 11.1 Coleman-Liau Index 14.6 ± 1.7 (11.2-18.2) Mayo Clinic 11.4 Automated Readability Index 10.9 ± 2.5 (5.3-16.3) Rare Diseases NIH 11.5 Average Readability Grade level* 11.9 ± 2.1 (6.7-15.3) Healthline 11.8 JAMA Benchmark Total Criteria Score‡ 2.7 ± 1.3 (0-4.0) Winchester Hospital 11.9 Discern Instrument§ 39.4 ± 6.9 (24.5-51.5) Dermcoll.edu 12.6 Quality level (Score) Number of websites Healthprep 12.7 Excellent (63-75) 0 National Organization for Rare Disorders 13.2 Good (51-62) 3 MedicineNet 13.3 Fair (39-50) 15 Cleveland Clinic Med 13.4 Poor (27-38) 5 Pemphigus.org 13.9 Very Poor (15-26) 1 Merck Manual Consumer 14.0 Medical Point 14.9 Wikipedia 15.2 DermNet NZ 15.3 NHS UK: National Health Service United Kingdom; NIH: National Institutes of Health. *Average readability grade level is average of Flesch Kincaid Grade Level, Gunning Fog Score, SMOG Index, Coleman-Liau Index, Automated Readability Index scores).†Flesch Kincaid Reading Ease is scored between 0 and 100, with a higher score indicating easier readability. Flesch Kincaid grade level, Gunning Fog score, SMOG index, Coleman-Liau index, and the Automated Readability index calculate an educational grade level likely required to comprehend a given text.‡The JAMA Benchmark uses 4 core standards to evaluate quality of websites: authorship, attribution (eg, references), disclosure (eg, mention of potential conflicts of interest), and currency (eg, is website dated), maximum score is 4.§The modified Discern Instrument, comprised of 15 questions, analyzes reliability and overall quality of written health information, maximum score is 75.4 Terri Shih David Geffen School of Medicine, University of California Los Angeles, Los Angeles, CA 90095, USA Natalie Villa Department of Dermatology, Dartmouth-Hitchcock Medical Center, Lebanon, NH 03766, USA Jennifer L. Hsiao* Department of Dermatology, University of Southern California, Los Angeles, CA 90007, USA Vivian Y. Shi Dermatology of Dermatology, University of Arkansas for Medical Sciences, Little Rock, AR 72205, USA *Corresponding author: Email: [email protected]