Qualitative Olfactory Disorders: Patient Experiences and Self-Management

Background Qualitative olfactory disorders in the form of parosmia and phantosmia are very subjective and cannot be measured at present. They pose an unpleasant experience for patients and a therapeutic challenge for clinicians. Objective This study aimed to characterise the specific experiences of patients affected by the qualitative symptoms of parosmia and phantosmia including both triggers for symptoms and self-help measures they have tried. Methods A cross-sectional survey questionnaire was developed with the input of patient experts within the charity Fifth Sense. The survey was then open online for 3 months to charity members complaining of qualitative symptoms. The survey captured the frequency and impact of symptoms and self-management undertaken. Reflective feedback was also captured from a patient workshop. Results There were 100 participants; 61% female, age range 13-88. Common self-reported aetiology included sinonasal disease (17%), idiopathic (33%) and post-viral olfactory loss (26%) and post-traumatic olfactory loss (23%). Parosmia was reported as a daily symptom in 67% compared to 31% for phantosmia; 36% complained of suffering with both symptoms. Only 4% of respondents reported having received any successful treatment for their qualitative symptoms and 58% reported having received no treatment whatsoever. Olfactory training was the most common self-management method reported. Conclusion This study illustrates that qualitative disturbances remain problematic for those who experience them due to the duration of symptoms, the relative lack of experience or knowledge amongst medical professionals and the lack of therapeutic options. In future, consideration needs to be given to adaptation and coping strategies to help patients deal with these symptoms

Patient experiences of post-infectious olfactory dysfunction

Introduction: To highlight the importance of the need for new treatment modalities, this study aimed to characterise the experience of patients with postinfectious olfactory dysfunction (PIOD) in terms of the treatment they received.  Methods: An online survey was hosted by the Norwich Clinical Trials Unit on the secure REDCap server. Members of the charity Fifth Sense (the UK charity that represents and supports people affected by smell and taste disorders) were invited to participate.  Results: There were 149 respondents, of whom 127 had identified themselves as having (or had) PIOD. The age range of respondents to the survey was 28-85 years, with a mean of 58 ± 12 years, with the duration of their disorder <5 years in 63% of cases. Respondents reported experiencing variable treatment with oral and/or intranasal steroids given typically (28%), often with no benefit, but with 50% receiving no treatment whatsoever; only 3% reported undertaking olfactory training. Over two-thirds of patients experience parosmia and, up to 5 years from the onset of the problem, were still actively seeking a solution.  Conclusion: There appears to be a need to encourage greater use of guidelines for olfactory disorders amongst medical practitioners and also to develop more effective treatments for patients with PIOD, where there is clearly an unmet need

Validation of the olfactory disorders questionnaire for English‐speaking patients with olfactory disorders

Objectives 1. To adapt the existing German language olfactory disorders questionnaire for use with English-speaking patients 2. To validate the adapted version for routine clinical use Design The translated version of the original German questionnaire was revised with a patient and a clinician to reflect British language and culture. Patients attending an olfactory dysfunction clinic were recruited to perform the adapted questionnaire on two occasions at least one month apart. Additional online participants completed the questionnaire via the charity Fifth Sense. Main outcome measures • Re-test reliability of the English olfactory disorders questionnaire (eODQ) in affected patients including potential for redundancy in any of the included questions • Correlation of eODQ scores with Sniffin’ Sticks scores Results Eighty-seven patients reporting olfactory dysfunction were recruited and had a mean age of 48 with 35% of them being male; 50 datasets were available for analysis. A total of 957 members of the charity entered responses into the online questionnaire; 699 responses could be scored with participants’ mean age of 55 years and with 69% reporting as female. The eODQ score and Sniffin’ Sticks TDI score at timepoint 1 were correlated to assess for concurrent validity, (r=-0.15, p=0.17) and showed no significant correlation. Female participants had a significantly higher mean total eODQ score than men, 55.75 compared to 52.28 (p=0.001). The average score was 54.7 (SD 13.5) with a range from 26 to 87. The internal consistency of the questionnaire was good with a Cronbach’s alpha of 0.90 (Confidence intervals 0.89, 0.91). Conclusions The results of this study support the use of the eODQ in a native English-speaking population and highlight the different distinctions between “objective” testing of olfaction with the Sniffin’ Sticks test and the patient reported impact of olfactory dysfunction on daily life. These two types of assessment can be easily administered in an outpatient setting and used in the assessment and management of olfactory dysfunction

Impact of olfactory disorders on personal safety and wellbeing: A cross-sectional observational study

Objectives: Investigate safety perceptions, quantify hazardous events, and analyse their manifestations in individuals with olfactory dysfunction through an online cross-sectional survey. Methods: An online survey, available from 25th February to 28th September 2022, captured data on demographics, olfactory disorder causes, safety concerns, and experienced hazardous events. Distributed via Fifth Sense channels, it targeted individuals with self-claimed olfactory dysfunction. Results: Of 432 responses, the majority were female (79.6%), aged 41–70, with 20.6% non-UK residents from 21 countries. Leading causes of dysfunction were Covid-19 (22%), idiopathic (20.8%), and congenital (14.4%). Safety concerns were high (85.9%), with gas, smoke, and food as major worries. Over 5 years, 32.2% faced ≥ 1 food incident, 14.8% ≥ 1 gas incident, 34.5% ≥ 1 gas scare, and 18.5% ≥ 1 work incident. Preventative measures were taken by 60.2% at home. Key limitations of this study were self-reported data and sampling bias of charity members. Conclusion: This study highlights the significant impact of smell loss on personal safety and emotional well-being. There is an unmet need in mitigating safety concerns/events for individuals with olfactory dysfunction. We suggest collaborate strategies such as educating the public sector and high-risk sectors (e.g. gas companies), and introducing 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) may allow proactive identification of at-risk people and corrective measures to take place

Nose Gym: An Interactive Smell Training Solution

When was the last time you had your sense of smell checked? Smell is one of the most neglected senses in daily life and in HCI. In Europe and the USA, around 22% of the general adult population has some form of smell dysfunction. This number rises to 75% for people aged between 70–80 years and negatively impacts peoples’ quality of life and well-being. Regular smell training can make a difference. Today, smell training is done by sniffing essential oils in jars or scented pens. Based on advances in digital technology, we present a new interactive smell training solution to help people train their nose. At CHI, users will have a chance to try out the scent-delivery device and companion App at the ‘Nose Gym’ booth. We will combine the interactivity with additional information on the I-smell project that is using this digital smell training solution in a real-world deployment to establish a culture of care for our sense of smell

Barriers to effective healthcare for patients who have smell or taste disorders

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 with 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, 3 not stated, 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 £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

Understanding the impact of chronic rhinosinusitis with nasal polyposis on smell and taste: An international patient experience survey

The aim is to understand the patient experience of living with chronic rhinosinusitis with nasal polyposis (CRSwNP), clinician interactions and how symptoms, smell and taste disturbance are managed. An anonymized, online survey was distributed through a UK charity, Fifth Sense, a UK otolaryngology clinic and online support groups to capture qualitative and quantitative data. Data were collected from 1st December 2022 to 1st February 2023. A total of 124 individuals participated. The majority were female (66%) and in the age range of 41–70 years; 74.2% of participants were from the UK with the rest from North America, Europe and Asia. A total of 107 participants declared they had CRSwNP. Rhinologists and general otolaryngology clinicians scored the highest for patient satisfaction whilst general practitioners scored the lowest. Satisfaction with the management of smell and taste disturbance was lower amongst all clinicians compared to overall satisfaction. Ratings correlated with response to therapy and clinician interactions. Respondents reported hyposmia/anosmia to be the most debilitating symptom. Surgery and oral steroids were considered to be effective; however, the benefit lasted less than six months (62%). Hyposmia/anosmia is a key CRSwNP symptom that has limited treatment options and is frequently undervalued by clinicians. There is a need for more effective management options, education and patient support

Changes in the Prevalence of Child and Youth Mental Disorders and Perceived Need for Professional Help between 1983 and 2014: Evidence from the Ontario Child Health Study

© The Author(s) 2019. Objectives: To examine: 1) changes in the prevalence of mental disorders and perceived need for professional help among children (ages 4 to 11) and youth (ages 12 to 16) between 1983 and 2014 in Ontario and 2) whether these changes vary by age and sex, urban-rural residency, poverty, lone-parent status, and immigrant background. Methods: The 1983 (n = 2836) and 2014 (n = 5785) Ontario Child Health Studies are provincially representative cross-sectional surveys with identical self-report checklist measures of conduct disorder, hyperactivity, and emotional disorder, as well as perceived need for professional help, assessed by integrating parent and teacher responses (ages 4 to 11) and parent and youth responses (ages 12 to 16). Results: The overall prevalence of perceived need for professional help increased from 6.8% to 18.9% among 4- to 16-year-olds. An increase in any disorder among children (15.4% to 19.6%) was attributable to increases in hyperactivity among males (8.9% to 15.7%). Although the prevalence of any disorder did not change among youth, conduct disorder decreased (7.2% to 2.5%) while emotional disorder increased (9.2% to 13.2%). The prevalence of any disorder increased more in rural and small to medium urban areas versus large urban areas. The prevalence of any disorder decreased for children and youth in immigrant but not nonimmigrant families. Conclusions: Although there have been decreases in the prevalence of conduct disorder, increases in other mental disorders and perceived need for professional help underscore the continued need for effective prevention and intervention programs

‘How to help your unwell child’: a sequential simulation project

During 2016–2017, National Health Service (NHS) England recorded 5.8 million attendances at accident and emergency departments (A&E) out of which 24% were deemed ‘avoidable’.1 Avoidable attendances are defined as an attendance at A&E resulting in care which could have been provided by a general practitioner (GP) or managed through self-care at home. ‘How to help your unwell child’ was a collaboration between Connecting Care for Children, and Imperial College Centre for Engagement and Simulation Science. The aim of the collaboration was to identify issues related to avoidable attendances at A&E in children under 5 years old in North West London. The overarching objective of the collaboration was to engage with local families to facilitate an understanding of their experiences of looking after unwell children suffering from minor illnesses. A sequential simulation (SqS Simulation) event was organised at a community centre to engage with local families. It was used as a tool to engage healthcare professionals and families in acknowledging parental journeys and to recognise their concerns in seeking healthcare for minor childhood illnesses