'Questionable' information found online for systemic sclerosis mouth treatments
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The overall quality of information found online regarding systemic sclerosis mouth treatment is “questionable” and requires a high level of reading skill, according to findings published in BMC Rheumatology.
“Due to the chronic and sometimes progressive nature of the disease, individuals with SSc are likely to require or wish to have the appropriate knowledge to help them to cope with the impairments of the disease,” Ismail Abdouh, MSc, of the University College London Eastman Dental Institute, and colleagues wrote.
“Individuals with oral and/or facial disease of SSc are likely to search for information concerning the features of the disease, their treatment options and perhaps the complications of therapy,” they added. “There is, however, no data on how helpful online information regarding the orofacial aspects of SSc may be for patients (or carers).”
To assess the quality and readability of information found online regarding mouth treatments in SSc, Abdouh and colleagues analyzed the first 100 results produced after searching several related phrases in Google. Search terms included “treatment of the mouth in scleroderma,” “treatment of the mouth in systemic sclerosis” and “treatment of the mouth in scleroderma/systemic sclerosis.” The Google search was conducted in November 2019. The researchers reviewed the first 100 websites in each search for duplicates and broken links.
After excluding scientific articles, book reviews, websites with non-related content, broken links, non-English language links, membership-based websites, promotional product websites, discussion groups, video feeds and online medical dictionaries, Abdouh and colleagues were left with 57 search results for their final analysis. Quality assessment included DISCERN instrument scores, along with the Journal of the American Medical Association (JAMA) benchmarks, and the presence of the Health on the Net seal.
Developed at the University of Oxford to examine the reliability of online content, the DISCERN instrument includes 16 items. Questions one through eight assess reliability, questions nine through 15 refer to specific details of information on treatment, and the last question provides an overall quality rating of the evaluated material. Each question is rated on a numerical scale from one to five, with one being “very poor,” two being “poor,” three defined as “moderate,” four being “good,” and five defined as “excellent.”
The researchers used Flesch Reading Ease Scores, Flesch-Kincaid Grade Level, the Simplified Measure of Gobbledygook Index and the Coleman-Liau index to judge readability.
According to the researchers, the mean overall DISCERN score was 2.37 (± 1.01). Only four websites, or 7% of the included total, achieved all four JAMA benchmarks. In addition, only 12 websites — 21.1% — displayed the Health on the Net seal. Meanwhile, the researchers judged the reading level among the majority of websites to be difficult to very difficult.
“This study highlights the poor quality and questionable reliability of the content of the associated online sources in relation to the treatment of the mouth in SSc,” Abdouh and colleagues wrote. “However, when considering the significant impact of SSc upon both physical and psychological aspects of patients, it is worrying that more high-quality patient centered material is not available to those searching online. Current results also suggest that the readability level of the available online information did not meet the recommended levels to be read and understood easily by the general population.”
“Thus, at present, patients with SSc who are seeking health-related online information should be aware of the substantial unmet needs regarding the available information about the treatment of the mouth and its related conditions,” they added. “Based on the results of this study, further work is required to ensure high quality, comprehensible and relevant online content is accessible to patients with SSc.”
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