The aim is to understand the patient experience of living with chronic rhinosinusitis with nasal polyposis (CRSwNP), clinician interactions and how symptoms, smell and taste disturbance are managed. An anonymized, online survey was distributed through a UK charity, Fifth Sense, a UK otolaryngology clinic and online support groups to capture qualitative and quantitative data. Data were collected from 1st December 2022 to 1st February 2023. A total of 124 individuals participated. The majority were female (66%) and in the age range of 41-70 years; 74.2% of participants were from the UK with the rest from North America, Europe and Asia. A total of 107 participants declared they had CRSwNP. Rhinologists and general otolaryngology clinicians scored the highest for patient satisfaction whilst general practitioners scored the lowest. Satisfaction with the management of smell and taste disturbance was lower amongst all clinicians compared to overall satisfaction. Ratings correlated with response to therapy and clinician interactions. Respondents reported hyposmia/anosmia to be the most debilitating symptom. Surgery and oral steroids were considered to be effective; however, the benefit lasted less than six months (62%). Hyposmia/anosmia is a key CRSwNP symptom that has limited treatment options and is frequently undervalued by clinicians. There is a need for more effective management options, education and patient support.
Keywords: anosmia; chronic rhinosinusitis; hyposmia; olfaction; patient experience; polyps; taste.