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.

Photobiomodulation and Miescher’s cheilitis granulomatosa: case report

Background Miescher’s cheilitis granulomatosa (MCG) is a rare chronic inflammatory disease and is known as the monosymptomatic clinical form of Melkersson-Rosenthal syndrome (MRS). It is characterised by swelling of one or both lips and more frequently affects the upper lip. Histopathological findings show the presence of numerous inflammatory infiltrates and granuloma formations. Pharmacological treatments and surgery have provided results that are positive yet insufficiently stable in the long term. The clinical case described is of a 68-year-old female patient with a diagnosis of MCG of the upper lip. Case presentation The patient was diagnosed and treated at the Oral Medicine and Oral Pathology outpatient clinic of Maxillofacial and Odontostomatology Unit, Fondazione Cà Granda IRCCS Ospedale Maggiore Policlinico. The patient was recommended localised treatments of photobiomodulation (PBM) using a diode laser with a 635 nm and 980 nm dual-wavelength (λ) approach, a 600-micron fibre, and a handpiece with a 1-cm-diameter lens at 300 mW. Three treatments a week were administered for four weeks for a total of 12 treatment sessions (T1–T12). After that, the patient had a long follow-up period of about 2 years. The therapeutic results were clear from the initial stages of treatment. There was an immediate, gradual, and consistent reduction in labial swelling. A reduction in the size of the lip by about 35% at T10–T12 was observed, returning the size and volume of the upper lip within the normal clinical range. The painful symptoms subsided after the seventh treatment (T7). The histopathological check at 3 months and the follow-up in particular confirmed the disease was in remission with satisfactorily stable treatment results. Moreover, the patient did not use any other treatments on the area from the early laser treatments through to the end of the follow-up period. Conclusions Our experience describes a clinical case of MCG treated with PBM and effectively resolved with a reduction of the lip swelling. The real success of the treatment emerged over time, showing that the tissue healing was stable. In absence of any collateral phenomena, this confirms the effective and documented therapeutic potential of PBM for chronic inflammatory infiltrates.