Discussion
Key results
Our study serves to illustrate a number of significant issues faced by
patients with chemosensory disorders. Firstly, a lack of recognition in
the wider medical profession but still with 1 in 4 ENT specialists
failing to convince their patients that they appreciated the impact of
their olfactory disorder; this was even more noticeable in over half of
neurologists encountered. In fact, it is evident that the experience of
this patient group with neurologists was largely disappointing.
Secondly, knowledge of appropriate treatments is lacking thus leading to
no treatment or to repeated ineffective treatments being applied. This
was further exacerbated by participants expressing little satisfaction
with the usefulness of the advice given. Thirdly, accessing a specialist
consultation was a challenge with 1 in 4 reporting difficulty in getting
a referral. Due to the paucity of specialists dedicated to chemosensory
disorders, respondents reported significant journeys and costs
associated with that. Finally, mental health aspects of being affected
by chemosensory disorders have been clearly highlighted and 15%
reported taking prescribed medication for this, therefore also
emphasising an additional healthcare burden.
Limitations
The survey will not have been seen by those who are not online or do not
have access to the aforementioned social media. This is likely to have
disproportionately affect the older generations. Due to the origin of
the survey in the UK and with Fifth Sense being a UK based charity, over
two thirds of the respondents reflect their experience with the National
Health Service setting in the UK. It is also possible that an unknown
number of patients may have had a good response to treatment, but these
cases will not be apparent if they are not Fifth Sense members or have
chosen not to respond to the survey because they were happy with the
outcome of their treatment. It may also be that the treatments applied
were reasonable, but nonetheless proved ineffective in resolving or
improving the olfactory disorder. The charity membership and survey
respondents will also tend to be more likely to be those who have
persistent symptoms and thus are more difficult to treat.
Interpretation
The demographics and aetiology of study participants was in keeping with
the typical female predominance seen in other studies and with sinonasal
disease and post-viral olfactory loss as leading
causes19-22. The study also underlines the mental
health impact of previous studies in those with olfactory
disorders14,15,19. However, this study makes a clear
reflection on the paucity of services provided to this patient group and
shows that the relatively poor engagement by the medical profession has
changed little in nearly two decades23. Our data would
suggest this is clearly an issue in the UK healthcare setting, but
international responses also suggest this is potentially a global issue
with little emphasis placed on either the importance of these senses in
everyday life or the consequences of losing them.
Generalisability
There is an unmet need for patients with olfactory disorders in
accessing healthcare including engagement from the medical profession
and signposting to appropriate information and treatment options. It
remains to be seen as to whether the current wave of Covid-19 related
smell loss as a result of the global pandemic will give rise to an
increase in patients presenting with post-viral olfactory loss but with
an estimated rate of anosmia globally of 5% and hyposmia up to 20%,
these disorders are common and engagement from the medical profession is
not matching this. This underlines the raison d’être of Fifth Sense
which amongst its strategic aims is the need to improve education of the
role of these senses in everyday life as well as providing support for
those affected by these disorders. To move this forward, Fifth Sense
plans to work with the medical profession to not only provide patient
support, but also to work with the wider body of stakeholders that need
to be engaged in improving the current situation faced by these patients
in accessing suitable care, including appropriate psychological support.