Abstract
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 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,
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 healthcare 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.