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.