Collecting data from a social network as a new method to explore recurrent corneal erosions syndrome

ABSTRACT

Purpose: Collecting medical data for clinical research studies needs tremendous perseverance. Yet, patients post a lot of their own personal health data on social media and share their experiences through international virtual support groups. Recurrent epithelial erosion (RCE) induces recurrent pain while reducing patients' quality of life. We report data of RCE patients who belong to an international English-speaking support group hosted by a social network. We aimed at better defining patients' symptomatology and the subjective efficacy of proposed treatments, and subsequently compared our results with literature. Methods: We designed a 24-question questionnaire consisting in three parts demographics, clinical data and therapies. The treatments' efficacy to prevent RCE was scored through a semi-quantitative 4-gradescale (from 'no effect? to 'very efficient'). In May 2021, we posted a 6-month ephemeral hyperlink on the RCE support group forum (Facebook, Meta®) pointing at our questionnaire Results: The RCE group included 1856 members. We harvested 257 complete responses (13.8%;222 women and 35 men;average age =42+/-12 y). Responders were mostly North Americans (n=152;59.1%), and Caucasian (n=214;83.3%). Fewer than one-third of RCEs were attested by a corneal subspecialist MD (n=70;27.2%), whereas 91.8% were referred to a health care professional (n=236). The predominant symptom was acute awakening pain (n=198;77.0%). RCE significantly impaired patients' quality of life (n=176;68.4%). Daily wearing of an anti-Covid-19 surgical mask may have increased the frequency of episodes (n=41;16.0%). Among surgical procedures, manual debridement was the most performed (n=56;21.8%), effective in a third of patients (n=17;30.3%). PTK was performed in one-fifth of patients (n=52;20.2%), effective in two-thirds (n=31;59.6%). 176 patients (68.4%) were treated with hypertonic gel, which, according to the patients was the most efficient medical treatment d (n=103;58.5%;p<0.0001). Conclusions: To our knowledge, this is the first real-life study involving patients with RCE, and the second collecting data through a social network in ophthalmology. Our results are consistent with previous retrospective or prospective reports based on medical records despite responder selection bias. The use of social networks to collect real life data seems to be promisingly reliable as a medical evaluation tool.