The Role of Social Media in Improving Patient Recruitment for Research Studies on Persistent Post-Infectious Olfactory Dysfunction

Background and Objectives: Since the COVID-19 pandemic, the number of cases of post-infectious olfactory dysfunction (PIOD) has substantially increased. Despite a good recovery rate, olfactory dysfunction (OD) becomes persistent in up to 15% of cases and further research is needed to find new treatment modalities for those patients who have not improved on currently available treatments. Social media has emerged as a potential avenue for patient recruitment, but its role in recruiting patients with smell dysfunction remains unexplored. We conducted a survey using the AbScent Facebook page to evaluate the feasibility of using this platform for future studies on smell dysfunction. Materials and Methods: Between 26 October and 4 November 2021, we conducted an online survey to evaluate propensity of patients with PIOD who would be willing to participate in research studies on smell dysfunction. Results: Sixty-five subjects were surveyed with a response rate of 90.7%. The median visual analogue scale (VAS) for sense of smell was 0 at infection and 2 at survey completion. The median length of OD was 1.6 years, and the main cause of OD was SARS-CoV-2 (57.6%). Parosmia was reported in 41 subjects (69.5%) whilst phantosmia in 22 (37.3%). The median length of olfactory training (OT) was 6 months but subjectively effective in 15 subjects (25.4%). Twenty-seven subjects (45.8%) tried other medications to improve olfaction, but only 6 participants (22.2%) reported an improvement. All subjects expressed their propensity to participate in future studies with most of them (38; 64.4%) willing to be enrolled either in medical and surgical studies or to be part of a randomised study design (11; 18.6%). Conclusions: Using the AbScent Facebook platform we successfully selected a population of subjects with persistent and severe OD that have failed to improve on available treatments and are willing to participate in further clinical trials.