Barriers to effective health care for patients who have smell or taste disorders.

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.