Results
Participants
A total of 673 participants recorded information on the survey during
the study period. Not all 673 participants responded to every question,
so percentages below are expressed with the total number of responses as
the denominator. For reference there are currently 3000 people
registered as members of Fifth Sense.
Descriptive data
Of the 673 participants, 510 were female and 160 were male. The age of
participants ranged from 10 to 88, with a mean age of 56 and a mode age
of 63. The geographic distribution of participants can be seen in figure
1 with 469 (70%) reporting their location as being in the UK. The
aetiology reported for participants can be seen in table 1 with 28%
reporting chronic rhinosinusitis, allergic rhinitis or
Aspirin/Non-Steroidal Exacerbated Respiratory Disease (A/NERD) and 25%
reporting post-viral olfactory loss (PVOL). The range of duration of
reported olfactory disorders was 1 month to 67 years with a mean of 13
years and a mode of 2 years.
Main results
Recognition of the olfactory disorder as a significant
problem
Getting recognition from doctors that their condition is a significant
problem for them was challenging for some participants, with 64%
reporting that their GP positively recognised their disorder and 76%
reporting recognition by an Otorhinolaryngologist ; for those who had
seen a neurologist, only 47% reported that they felt their disorder had
been recognised and for those seeking a private specialist opinion,
66%.
Prescription of treatment
In primary care, 195 respondents (40%) reported receiving a
prescription related to their olfactory disorder. In secondary care
respondents reported receiving a prescription from 54% of
Otorhinolaryngologists and 10% of Neurologists respectively. For those
who sought private consultations, 46% reported receiving a
prescription. Repeated treatments were reported from 31% of GPs and
37% of Otorhinolaryngologists. In terms of effectiveness of the
treatment, 8% of GP prescriptions, 23% of ENT prescriptions, 2% of
Neurology prescriptions and 20% of private prescriptions were deemed by
the patients to have helped improve their sensory deficit.
Useful information and advice
In primary care only 7% felt that they received useful information and
advice, with a rise to 33% for ENT and 13% in Neurology in secondary
care and in the private sector only 28%.
Healthcare consultations
The range of reported GP consultations for respondents was 0 to 150 with
a mean of 5.8 and a mode of 1. In Otorhinolaryngology the range was 0 to
75 with a mean of 4.6 and a mode of 1. For Neurology this was much lower
with a range of 0 to 54 and a mean of 0.9 and similarly in private
healthcare the range was 0 to 50 with a mean of 1.7. Seventy-one percent
of respondents reported being able to get a referral to
Otorhinolaryngology and of these 34% were given a choice of location
but only 20% a choice of specialist. Information from the Fifth Sense
website informed 29% to guide their choice of referral centre with 54%
having to request the referral themselves and 59% stating they felt
their case was recognised as needing a referral. Only 4% of respondents
reported having their case declined by their local Clinical
Commissioning Group but 40% felt that Fifth Sense information had
helped the process of getting medical advice.
Travel and cost of healthcare
appointments
Respondents were asked to estimate how far they had travelled in miles
to seek information or treatment for their disorder and reported a range
of 0 to 15250 miles with a mean of 200 miles. The personal cost of doing
so showed a range of £0-41,100 (highest figure in USA) with a mean of
£421.
Improvement and treatment impact
Only 138 respondents reported an improvement of their disorder with 89
(17%) saying they felt as if this was as the result of medical advice
and/or treatment and 59 (11%) who felt that it was in response to smell
training.
Quality of Life including mental
health
All but 14 respondents reported an impact on their quality of life with
60% reporting either anxiety and or depression as a consequence of
their sensory loss. Specific treatments reported included 102 taking
GP-prescribed antidepressants/sedatives/anxiolytics, 42 taking over the
counter remedies, 73 receiving counselling and other alternative
therapies used included acupuncture, marijuana use and meditation.
Overall patient
perspective
An open comments section was included to supplement the quantitative
data that provided some important insights from our participants
perspectives.
- It is not really taken seriously. The attitude is almost ” Well,
at least you are not deaf or blind”. The effect on my daily life is
not recognised.
- I am low in mood. I hate eating and don’t feel hungry. It
affects my job and makes me feel unsafe from fire and gas leakages.
- I feel that even ENT specialists do not see this problem which
truly affects your quality of life as even a problem.
- Feel like it’s minimized by people and professionals who think
it must be nice not to smell kids’ dirty nappies or that you’re only
missing out on smelling flowers and cookies in the oven. It is a real
issue - gas hob, smoke, taste diminishes, lack of shared experience
with family, and memories compromised.
- Following treatment, I am able to smell again much of the time.
It is so wonderful to be able to smell the ocean, to smell coffee
brewing, to smell bacon or onions cooking. I can smell my husband’s
skin, or the soap he last used. I can smell the soap I use in the
shower, which never ceases to amaze me. I can smell whether fruit is
ripe or not. This is all incredibly wonderful, it adds such a richness
to your life. Not to mention: I can smell gas, if the burner on the
stove didn’t turn on correctly, or paint, if a hallway is newly
painted. I can smell if milk has gone sour. If I can smell these
things I can protect myself from them better.