JMIR Publications

ABSTRACT

Background:

The 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 post-infectious anosmia, and the incidence of both has increased substantially since the outbreak of COVID-19.

Objective:

To explore the symptoms and sequalae of post-infectious 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.

Methods:

A thematic analysis of a social media support group for parosmia and phantosmia was conducted between June to December 2020.

Results:

In this paper, we identify a novel symptom, olfactory perseveration, a triggered, identifiable, and usually unpleasant olfactory percept which persists in the absence of an ongoing stimulus. We also observed fluctuation in intensity and duration of symptoms of parosmia, phantosmia and olfactory perseveration. In addition, a common group of parosmic triggers such as coffee, meat, onion, and toothpaste were commonly identified as triggers of these distorted perceptions, but people struggled to describe the 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.

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.