Quality and Readability of Online Information Available for the General Public on Orofacial Granulomatosis

OBJECTIVE: Orofacial granulomatosis (OFG) is a relatively rare entity. The information pertaining to it is accessible to patients and care-givers on the internet in a scarce quantity. The aims of the current study were to evaluate quality, readability, understandability and actionability of information regarding the disease-orofacial granulomatosis-available to the public on the internet. The purpose of the study was to evaluate ease of access and understandability of language available for individuals affected by OFG. Although the incidence of the disease is very low in Pakistan, patients with symptoms of OFG rarely report to clinics due to social stigma. METHODOLOGY: A vivid selection process was chosen for the study. The study was conducted online on 'google scholar' website. Four different search terms were used 'ofg disease', 'orofacial granulomatosis', 'cheilitis granulomatosa' and 'Melkersson Rosenthal Syndrome' to seek information on orofacial granulomatosis. All of this was done during July, 2020 to October 2020. The first 100 results from each term were shortlisted and evaluated further. Exclusion criteria was used and several repetitive sites, non-functional links, sites containing content irrelevant to the search were excluded. This resulted in 58 websites relevant to the search that were then categorized according to affiliation, specialisation, content type as well as content presentation. Three grading assessments were utilized to assess the quality of this online information; the Journal of the American Medical Association (JAMA) benchmarks, the Patient Education Materials Assessment Tool for Printable Materials (PEMAT-P) and the presence of Health on the Net (HON) seal. In order to assess the readability of the content in the websites, the Flesch Reading Ease Score (FRES) and Simple Measure of Gobbledygook (SMOG) were used. RESULTS: The overall quality of online information on orofacial granulomatosis is difficult to comprehend and act upon as assessed by the PEMAT. The HON seal was visible on only 5 (9%) websites. In terms of readability, only one (2%) website was fairly easy to read. CONCLUSIONS: The online information on orofacial granulomatosis is qualitatively poor and does not serve its purpose in true sense. There is a need to devise better, high quality online readable information for patients and the public to understand. KEY WORDS: Orofacial granulomatosis, cheilitis granulomatosa, PEMAT.