OBJECTIVES: Smell/taste disturbances are a common but underrated, under‐researched and under treated sensory loss and an independent risk factor for reduced longevity. This study aimed to characterise the experience of patients with these disorders in seeking help. DESIGN: The study was designed by patients together with clinicians through a dedicated workshop and conducted as a cross‐sectional survey to capture experiences in public and private healthcare settings internationally. SETTING: Primary, secondary and tertiary care. PARTICIPANTS: Any members of the public self‐reporting a smell/taste disorder were invited to participate. MAIN OUTCOME MEASURES: The survey captured information including experience of getting consultations and referrals to medical professionals, treatments offered, costs incurred and related problems with mental health. RESULTS: Of 673 participants; 510 female, 160 male, three not stated, self‐reported aetiology included sinonasal disease (24%), idiopathic (24%) and post‐viral olfactory dysfunction (22%); true gustatory disorders were typically rare. Failure of medical professionals to recognise the problem was a key concern ‐ 64%, 76% and 47% of GPs, ENT specialists and Neurologists acknowledged, respectively. Other issues included repeated ineffective treatments, difficulties getting referrals to secondary/tertiary care, mental health problems (60%) and a mean personal cost of £421 to seeking advice and treatment. Whilst the participants were self‐selecting, however, they do represent those who are seeking help and intervention for their disorders. CONCLUSION: There is an unmet need for these patients in accessing health care including a clear need to improve education of and engagement with the medical profession in Otorhinolaryngology, General Practice and other specialties, in order to remove the current barriers they face.
Barriers to effective health care for patients who have smell or taste disorders