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\begin{document}

\title{Impact of olfactory disorders on personal safety \& wellbeing: a
cross-sectional observational study}



\author[1]{Liam Lee}%
\author[1]{Louis Luke}%
\author[2]{Duncan Boak}%
\author[1]{Carl Philpott}%
\affil[1]{University of East Anglia Norwich Medical School}%
\affil[2]{Fifth Sense}%


\vspace{-1em}



  
  \date{May 26, 2024}


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\selectlanguage{english}
\begin{abstract}
\textbf{Abstract} Objectives: Olfactory dysfunction can expose
individuals to day-to-day safety hazards. We sought to investigate the
perceptions of safety in individuals affected with olfactory
dysfunction, quantify the incidence of hazardous events, and how safety
scares/incidents manifest through patient stories. Methods: A survey
that included questions to capture quantitative and qualitative data was
created. Responses were collected from 25th February 2022 to 28th
September 2022. The survey was distributed through Fifth Sense media
channels and open to anyone who claimed to suffer from olfactory
dysfunction. Results: Our survey collected responses from 432
individuals. The majority were female (79.6\%), ages 41-70. Around a
fifth (16.7\%) were non-UK residents, encompassing 21 different
countries. Covid-19 was the commonest cause of olfactory dysfunction
(22\%). Majority (85.9\%) were worried about any form of safety due to
their smell dysfunction. Gas, smoke and food were major concerns.
Specifically, 32.2\%, 14.8\%, 34.5\%, 18.5\% of participants have
experienced at least one food incident, gas incident, gas scare, and
work scare, respectively. Affected individuals have taken preventative
measures at home (60.2\%). Conclusion: There is an unmet need in
mitigating safety concerns/events for individuals with olfactory
dysfunction. We suggest educating the public sector and high-risk
sectors such as gas companies, and introduction of safety `scratch and
sniff' cards as a screening method. Regular assessment of an
individual's olfactory ability, similar to routine assessments for other
sensory systems (sight, hearing) would allow proactive identification of
at-risk people, and allow corrective measures to take place.%
\end{abstract}%



\sloppy


\textbf{Impact of olfactory disorders on personal safety \& wellbeing: a
cross-sectional observational study}

\textbf{Abstract}

\emph{Objectives:}

Olfactory dysfunction can expose individuals to day-to-day safety
hazards. We sought to investigate the perceptions of safety in
individuals affected with olfactory dysfunction, quantify the incidence
of hazardous events, and how safety scares/incidents manifest through
patient stories.

\emph{Methods:}

A survey that included questions to capture quantitative and qualitative
data was created. Responses were collected from 25th February 2022 to
28th September 2022. The survey was distributed through Fifth Sense
media channels and open to anyone who claimed to suffer from olfactory
dysfunction.

\emph{Results:}

Our survey collected responses from 432 individuals. The majority were
female (79.6\%), ages 41-70. Around a fifth (16.7\%) were non-UK
residents, encompassing 21 different countries. Covid-19 was the
commonest cause of olfactory dysfunction (22\%). Majority (85.9\%) were
worried about any form of safety due to their smell dysfunction. Gas,
smoke and food were major concerns. Specifically, 32.2\%, 14.8\%,
34.5\%, 18.5\% of participants have experienced at least one food
incident, gas incident, gas scare, and work scare, respectively.
Affected individuals have taken preventative measures at home (60.2\%).

\emph{Conclusion:}

There is an unmet need in mitigating safety concerns/events for
individuals with olfactory dysfunction. We suggest educating the public
sector and high-risk sectors such as gas companies, and introduction of
safety `scratch and sniff' cards as a screening method. Regular
assessment of an individual's olfactory ability, similar to routine
assessments for other sensory systems (sight, hearing) would allow
proactive identification of at-risk people, and allow corrective
measures to take place.

\textbf{Key points}

\begin{enumerate}
\tightlist
\item
  The study investigated safety perceptions and incidences of hazardous
  events among individuals with olfactory dysfunction.
\item
  The survey gathered responses from 432 individuals, primarily women
  aged 41-70 from different countries, including 16.7\% non-UK.
\item
  Majority (85.9\%) expressed safety concerns, particularly around gas,
  smoke, and food, with notable incidents recorded.
\item
  5-year incidence of hazardous events remains substantial.
\item
  The study identifies a need for better safety measures and routine
  assessments for people with olfactory dysfunction.
\end{enumerate}

\textbf{1. Introduction}

\emph{1.1. Background and rationale}

Loss of smell is a common but debilitating condition. It is estimated
that the prevalence of either complete loss of smell (anosmia) or
incomplete loss of smell (hyposmia) is approximately 2.7\% to 24.5\% in
population-based studies based on objective olfactory assessment . Loss
of smell disproportionally affects older people . Loss of smell can
affect individual safety in many settings. However, people with
olfactory dysfunction remain understudied and under-represented compared
to other conditions in ENT. The increased risk of coal gas poisoning in
individuals with smell loss was highlighted in 1957 . However, since
then, only a few studies have assessed the safety risks of loss of
smell. Studies have quantitatively demonstrated the high prevalence of
safety risks, but with limited detail on incidence for number of
hazardous events . In addition, few studies captured the qualitative
aspect and the nuances of how these risks manifest . Consequently,
limited progress has been made in mitigating these safety risks. A
survey in 2014 highlighted the safety aspects of smell impairment,
suggesting the safety issue remains a concern . With Covid-19 and an
ageing population contributing to the increased prevalence of olfactory
dysfunction it is crucial to amplify the patients' voices and tackle the
challenges through appropriate support and protection .

\emph{1.2 Objectives}

We sought to investigate the perception of safety reported by
individuals with loss of smell, estimate its incidence, and how safety
scares/incidents tend to manifest. The findings from this survey will be
significant in identifying unmet needs in providing safety support for
individuals with loss of smell.

\textbf{2. Materials and Methods}

\emph{2.1 Study design}

This study is a cross-sectional survey exploring the personal safety and
emotional well-being of those affected with olfactory dysfunction. The
survey was created on SurveyMonkey, designed to capture both
quantitative and qualitative data. This survey included a combination of
multiple-choice answers, a rating scale, and opportunities for
participants to enter free text. Data included in analyses were
responses from 25th February 2022 to 28th September 2022. The survey
remains open for continuous data collection. The study complied to the
STROBE guidelines.

As the survey was anonymous and considered to be service evaluation,
there was no ethical approval sought in line with the Health Regulation
Authority guidance:
http://www.hra-decisiontools.org.uk/research/docs/DefiningResearchTable\_Oct20
17-1.pdf.

\emph{2.2 Setting}

Data was collected through the UK charity Fifth Sense which supports
people affected by smell and taste disorders. The survey was shared via
email newsletter and social media channels and open to individuals
worldwide. The participants could access the survey online free of
charge.

\emph{2.3 Participants}

Anyone with a medical diagnosis or those who self-identified as having a
problem with their sense of smell were eligible to participate in the
survey.

\emph{2.4 Data sources and Variables}

The survey collected demographics (gender, age, and region of
residence), details about olfactory dysfunction (cause and duration),
safety concerns and its effect on day-to-day living. Full survey is
available here: https://www.surveymonkey.co.uk/r/2BR3XTC.

\emph{2.5 Bias}

As the survey was distributed online via a UK-based charity, there is a
selection bias towards the members of the charity, members with internet
access and UK residents. In addition, individuals with more significant
olfactory dysfunction may be more likely to respond. There is a risk of
response bias as participants tend to agree or provide positive answers
in, e.g. in rating scales and yes/no questions. We aimed to mitigate
this issue by incorporating free text boxes to allow participants to be
more nuanced.

\emph{2.6 Study size and statistical methods}

No minimum sample size was required for the study as no statistical
analyses were performed. All figures were created on R using ggplot2
package .

\textbf{3. Results}

\emph{3.1 Participants}

The survey gathered responses from 432 participants. Answers from all
432 participants were analysed in the study.

\emph{3.2 Descriptive data}

Patient demographics are summarized in Table 1. Out of the participants,
most participants were female (79.6\%), followed by male (18.5\%). The
most common age groups were between 41-55 and 56-70. There was a wide
range of `professions', with top 3 most common answers being retired
(26.9\%), teacher (4.4\%), and administrator job (3.1\%). Majority of
respondents were from England, but a significant portion (16.7\%) were
from across the world with 48 out of 72 participants abroad from United
States.

\emph{3.3 Main results}

\emph{3.3.1 Causes and duration of olfactory dysfunction}

Covid-19 infection was reported by 95 people as cause for their
olfactory dysfunction, closely followed by idiopathic reported by 90
people. Remaining causes in descending order were congenital (62),
post-traumatic head injury (61), viral infection other than Covid-19
(47), sino-nasal disorder (46), and other causes (36). Within other
causes, a myriad of aetiologies was mentioned including intracranial
lesions (e.g. meningioma and chondrosarcoma), iatrogenic (secondary to
brain/nasal operation), facial trauma and large doses of analgesia.

Roughly half of the respondents have had olfactory dysfunction for more
than 5 years (234), followed by 2-5 years (73), 1-2 years (63), less
than a year (54), and eight respondents were unsure of the duration.

\emph{3.3.2 Safety concerns}

When asked about safety, majority of respondents stated they were
worried about safety with 371 (85.9\%) responding yes, 31 responding no
(7.2\%), and 30 who have not thought about it until now (6.9\%). Gas,
food freshness and smoke were major concerns for majority of respondents
(Fig. 1). Other household odours were the most popular answer for
`somewhat concerned', followed by personal hygiene and food freshness.
Hygiene of babies and children was the most popular answer in `haven't
thought about until now' and `not concerned at all' group. A separate
figure for UK participants only was created but the trend of answers
remained unchanged (Supplementary Material, Fig. 1).

Other worries written by the respondents were burning food when cooking,
faulty exhausts in cars, perfume, and missing out on the smell of
others.

\emph{3.3.3 Quantification and examples of hazardous events past 5
years}

We sought to quantify any hazardous events experienced in the last 5
years (Fig. 2). For all types of scares/incidents, most have not
experienced any adverse events. A separate figure for UK participants
only was created but the trend of answers remained unchanged
(Supplementary Material, Fig. 2).

Recurring words were ``worry'', ``concern'', ``anxiety'', ``paranoid'',
``avoid''. For instance, one respondent responded ``I have this paranoid
habit to check the gas multiple times a day, before leaving the house,
before going to bed or right in the middle of a movie just in case I
forgot. When I'm out I always wonder if I triple checked that the gas
was off so I have this anxiety to come back to a blown up
house\ldots{}not fun!''.

In terms of the incidence, 32.2\%, 14.8\%, 34.5\%, 18.5\% of
participants have experienced at least one food incident, gas incident,
gas scare, and work scare the past 5 years respectively (Supplementary
Material, Table 1). When considering only UK respondents, the
percentages of at least one experience were similar at 29.7\%, 14.7\%,
34.8\%, 15.3\% in the order of food incident, gas incident, gas scare,
and work scare (Supplementary Material, Fig. 1). Examples of hazardous
events are provided in Table 2.

\emph{3.3.4 Mitigations}

Approximately 60\% stated they have taken measures at home to reduce the
risks associated with olfactory dysfunction. Recurring examples were
installing gas detectors, being more cautious (e.g. throwing food away
past best before date, not having gas at all, etc.), and relying on
another person's sense of smell. For individuals who did not take
measures at home they said they were unaware gas detectors existed.
Measures taken by employer (43\%) includes setting up smoke/gas
detectors, requiring to work with a colleague, and providing extra
protection against Covid-19. However, it should be noted that roughly a
quarter of the participants were retired, and therefore deemed the
question as not relevant.

\textbf{4. Discussion}

\emph{4.1 Key results}

This international survey highlights the impact of olfactory disorders
on personal safety. Post-viral olfactory loss including Covid-19
accounted for 32.9\% of respondents, highlighting the increasing
prevalence of olfactory dysfunction since the start of the pandemic.
Irrespective of the cause, 85.9\% were concerned about safety. The
percentages of at least one hazardous experience were 32.2\%, 14.8\%,
34.5\%, 18.5\% in the order of food incident, gas incident, gas scare,
and work scare. There was a recurrent use of words that suggested an
underlying anxiety that led to precautionary measures in fear of having
an accident.

\emph{4.2 Strengths and limitations}

It is essential to highlight the strengths of this cross-sectional
survey. Firstly, many respondents with a range of olfactory disorders
participated in this survey shedding light on the impact of olfactory
disorders on personal health and safety. Secondly, this survey
quantified the occurrence of safety scares/incidents in the preceding 5
years allowing qualitative data to be collected detailing such events.
Lastly, data were collected anonymously allowing respondents to give
honest accounts of their experiences.

However, there are important limitations with this study. Firstly, the
major limitation is selection bias of this study as aforementioned. The
gender distribution is heavily skewed towards females, and the aetiology
of olfactory dysfunction within our population group is different from
less biased retrospective studies . This could be because individuals
with limited treatment options, such as idiopathic and congenital
olfactory dysfunction, seek help from charities and support groups more
compared to individuals with e.g. sino-nasal olfactory dysfunction which
has more treatment options. In addition, approximately half of the
respondents have lived with olfactory dysfunction for more than 5 years,
allowing them more time to set mitigations to reduce hazardous events.
This may underestimate the 5-year incidence rate. Secondly, all
responses were self-reported, including the aetiology of olfactory
dysfunction, number of hazardous events, and the details of how the
events manifested. These could introduce bias and inaccuracies due to
forgetfulness, misunderstanding of questions, or intentional
misrepresentation. Thirdly, this survey may be prone to non-response
bias, and the response rate is unknown. There might be a non-response
bias, i.e., the views of those who did not respond might systematically
differ from those who did. Lastly, a subgroup analysis was not conducted
to determine which specific demographic groups might be at a higher risk
to hazardous events.

\emph{4.3 Interpretation}

A retrospective study by Santos et al. (2004) reported that there was an
positive trend in number of hazardous events and degree of olfactory
impairment. Within the completely anosmic group, 45.2\% reported they
experienced a hazardous event during their lifetime, in contrast to 19\%
in the normosmic group . Of the hazardous events, cooking-related hazard
(e.g. burning pots and pans) was experienced by 45\%, and gas leak was
experienced by 23\%. Another retrospective study echoed these findings,
reporting burning pots and pans was the most common form of hazardous
event experienced by \textless{}25\%, and only \textless{}10\%
experienced an unnoticed gas leak. Our findings report 14.8\% had at
least one gas incident, and 34.5\% had at least one gas scare the past 5
years. While direct comparison is challenging due to differences in
hazard definition, our findings highlight a similarly substantial
percentage of individuals affected. Considering our survey specifically
captured hazardous events the past 5 years, the proportion of
individuals who experienced at least one hazardous event during their
lifetime is expected to be higher.

Another important finding in our survey is the impact of olfactory
disturbance on a person's quality of life, not just limited to physical
safety and hygiene, but also their emotional well-being as a consequence
of living in fear. Studies that performed thematic analyses identified
olfactory disturbance to impact different aspects of life, including the
detection of hazards, the feeling of social isolation, negative emotions
including depression, and physical health . Our findings echo the
results of Keller and Malaspina's online survey of 1000 patients with
olfactory dysfunction, where 72\% were concerned about hazard avoidance
and the lack of food enjoyment . Miwa et al. highlighted that 75\% of
participants were concerned about spoiled food and 61\% were concerned
about the failure to detect fire, gas or smoke . These themes were
concordant with other surveys' results . In our survey, a recurring
method to mitigate adverse events was having another person present in
the house or workplace to help alert the respondent of danger. However,
this mitigation is of no help to people who live alone. According to
Office of National Statistics data, around 30.1\% over the age of 65 in
the UK live alone .

\emph{4.4 Generalisability}

The safety implications are relevant for anyone with olfactory
dysfunction, and protection for this population group is crucial. In the
UK, smoke and carbon monoxide detectors are routinely installed. New
legislation introduced in October 2022 in England made these detectors
mandatory in both socially and private rented properties . To the
contrary, natural gas detectors is not commonplace and has no legal
requirement for them to be installed. The cost of gas detectors can
range anywhere from 20 GBP to 5000 GBP depending on the specifications.
There is a need for greater recognition of these safety risks, and
education about the possible solutions, including making standardised,
low-cost gas detectors widely available.

\textbf{Conclusion}

We have demonstrated the safety concerns among individuals with
olfactory dysfunction, incidence of hazardous events over the last 5
years, and highlighted the impact on mental well-being. There is a need
for collaborative strategies from the government, healthcare sector and
high-risk sectors such as gas companies to address this issue. Key areas
of discussion would be the safety risks faced by individuals with
olfactory dysfunction, cost-effective natural gas detectors to be made
widely available along with simple tools such as scratch and sniff cards
as a screening method to identify and protect vulnerable individuals
susceptible to safety hazards. Routine assessment of olfactory ability
in public health settings, particularly for older people, will also play
a key role in identifying `at risk' individuals.

\textbf{References}



\textbf{List of titles/captions for each figure}

Figure 1. Degree of safety concerns for gas, smoke, food freshness,
personal hygiene, hygiene of babies and children, and other household
odours (e.g. waste bins or pets).

Figure 2. Scares and incidents in the last 5 years. We defined a `scare'
as a situation in which the individual was not harmed, such as a simple
appliance (e.g. cooker or hob) not being properly turned off and
rectified soon after. We defined an `incident' as a situation in which
the individual was at risk of serious harm such as a widespread gas leak
and appliances catching on fire, or has led to harm such as explosion
and experiencing symptoms.

\textbf{Hosted file}

\verb`Main figures and tables document - Edited.docx`  available at \url{https://authorea.com/users/637644/articles/653859-impact-of-olfactory-disorders-on-personal-safety-wellbeing-a-cross-sectional-observational-study}

\selectlanguage{english}
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\end{document}

