Abstract
ObjectivesSmell/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.DesignThe 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.SettingPrimary, secondary and tertiary care.ParticipantsAny members of the public self‐reporting a smell/taste disorder were invited to participate.Main outcome measuresThe survey captured information including experience of getting consultations and referrals to medical professionals, treatments offered, costs incurred and related problems with mental health.ResultsOf 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.ConclusionThere 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.
Highlights
Common causes of olfactory disorders include chronic rhinosinusitis, post-viral olfactory loss and post-traumatic olfactory loss[2] as well as it being present in the majority of cases of Parkinson's disease and common in Alzheimer's disease.[3]
We have witnessed the rise of sudden onset anosmia as a marker of COVID-19 infection caused by the SARS-CoV-2 virus.4-11 It remains to be seen how many new cases of lasting olfactory loss will arise from those afflicted by the pandemic, but it is possible that over 6 million people globally have symptoms that last beyond 4 weeks based on WHO infection rates
Recent population studies have identified anosmia as an independent risk factor for shortened longevity, even after controlling for dementia and cardiovascular disease.12-15 It is not clear why this is so but may suggest that the olfactory system acts as a barometer of environmental impact on the central nervous system as a whole
Summary
Smell is the forgotten sense; even when facing a problem with their sense of smell, patients often struggle to get recognition, let alone diagnosis or treatment from healthcare professionals. Recent population studies have identified anosmia as an independent risk factor for shortened longevity, even after controlling for dementia and cardiovascular disease.12-15 It is not clear why this is so but may suggest that the olfactory system acts as a barometer of environmental impact on the central nervous system as a whole. As this phenomenon has been observed in several countries it clearly demonstrates that olfactory disorders deserve to receive greater attention than they currently do. Gustatory disorders in accessing health care as a patient and public co-production.[20]
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