Qualitative Olfactory Disorders: Patient Experiences and Self-Management

Area of Science:

• Otolaryngology
• Neuroscience
• Patient Experience Research

Background:

• Qualitative olfactory disorders, including parosmia and phantosmia, are subjective and currently unmeasurable.
• These conditions present significant challenges for both patients and clinicians due to their unpleasant nature and lack of effective treatments.

Purpose of the Study:

• To characterize the specific experiences of patients with parosmia and phantosmia.
• To identify triggers for these qualitative olfactory symptoms.
• To document self-help and management strategies employed by patients.

Main Methods:

• A cross-sectional online survey was developed with patient expert input.
• The survey collected data on symptom frequency, impact, and self-management over three months.
• Reflective feedback was gathered from a patient workshop.

Main Results:

• 100 participants (61% female, age 13-88) completed the survey.
• Common causes included idiopathic (33%), post-viral (26%), and post-traumatic (23%) olfactory loss.
• Parosmia affected 67% daily; 36% experienced both parosmia and phantosmia.
• Only 4% reported successful treatment; 58% received no treatment.
• Olfactory training was the most frequent self-management method.

Conclusions:

• Qualitative olfactory disturbances remain a significant problem due to symptom duration and limited therapeutic options.
• There is a notable lack of medical professional knowledge and effective treatments for parosmia and phantosmia.
• Future efforts should focus on developing adaptation and coping strategies for patients experiencing these symptoms.