Abstract

BackgroundThe impact of qualitative olfactory disorders is underestimated. Parosmia, the distorted perception of familiar odors, and phantosmia, the experience of odors in the absence of a stimulus, can arise following postinfectious anosmia, and the incidences of both have increased substantially since the outbreak of COVID-19.ObjectiveThe aims of this study are to explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders.MethodsA thematic analysis and content analysis of posts in the AbScent Parosmia and Phantosmia Support group on Facebook was conducted between June and December 2020.ResultsIn this paper, we identify a novel symptom, olfactory perseveration, which is a triggered, identifiable, and usually unpleasant olfactory percept that persists in the absence of an ongoing stimulus. We also observe fluctuations in the intensity and duration of symptoms of parosmia, phantosmia, and olfactory perseveration. In addition, we identify a group of the most common items (coffee, meat, onion, and toothpaste) that trigger distortions; however, people have difficulty describing these distortions, using words associated with disgust and revulsion. The emotional aspect of living with qualitative olfactory dysfunction was evident and highlighted the detrimental impact on mental health.ConclusionsQualitative and unsolicited data acquired from social media has provided useful insights into the patient experience of parosmia and phantosmia, which can inform rehabilitation strategies and ongoing research into understanding the molecular triggers associated with parosmic distortions and research into patient benefit.

Highlights

  • Olfactory Dysfunction Before and Since COVID-19Until recently, olfactory dysfunction was a little-recognized and underestimated disorder, distressing to those affected and with few effective treatments available

  • The aims of the paper are to qualitatively explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome, using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders

  • Much of the research into the changes in smell and taste during the pandemic has focused on patients who have had confirmed cases of COVID-19, either through positive tests or clinical diagnosis, the information presented here is about recent self-reported changes that have not been confirmed as being related to COVID-19 infection

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Summary

Introduction

Background: Olfactory Dysfunction Before and Since COVID-19Until recently, olfactory dysfunction was a little-recognized and underestimated disorder, distressing to those affected and with few effective treatments available. Given that there have been >200 million cases of COVID-19 globally (as of August 13, 2021) [5], approximately 100 million people will have been affected by smell loss. The distorted perception of familiar odors, and phantosmia, the experience of odors in the absence of a stimulus, can arise following postinfectious anosmia, and the incidences of both have increased substantially since the outbreak of COVID-19. Objective: The aims of this study are to explore the symptoms and sequalae of postinfectious olfactory dysfunction syndrome using unstructured and unsolicited threads from social media, and to articulate the perspectives and concerns of patients affected by these debilitating olfactory disorders. Conclusions: Qualitative and unsolicited data acquired from social media has provided useful insights into the patient experience of parosmia and phantosmia, which can inform rehabilitation strategies and ongoing research into understanding the molecular triggers associated with parosmic distortions and research into patient benefit

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