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\begin{document}

\title{Barriers to Effective Healthcare for Patients Who Have Smell or Taste
Disorders}



\author[1]{Stephen Ball}%
\author[2]{Duncan Boak}%
\author[2]{Joanne Dixon}%
\author[3]{Sean Carrie}%
\author[4]{Carl Philpott}%
\affil[1]{Newcastle University Faculty of Medical Sciences}%
\affil[2]{Fifth Sense}%
\affil[3]{Newcastle Upon Tyne Hospitals NHS Foundation Trust}%
\affil[4]{University of East Anglia}%


\vspace{-1em}



  
  \date{May 26, 2024}


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\begin{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 \selectlanguage{ngerman}£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.%
\end{abstract}\selectlanguage{ngerman}%



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