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Objectives: To determine the top 10 research priorities in Smell and Taste Disorders (SATD). Design: After steering group was established, an electronic survey was disseminated to determine the list of questions. After removing out‐of‐scope responses, the remainder were consolidated to create summary questions. A literature search was conducted to remove already answered questions. A second survey was used to determine the top questions that formed the subject of final debate at a workshop attended by clinicians and patients to determine the top 10 priorities. Setting: A James Lind Alliance Priority Setting Partnership (JLAPSP) was established by FifthSense to identify the top 10 research questions in SATDs in the United Kingdom. Participant: All stakeholders in SATDs (patients, healthcare professionals, family, carers, researchers). Main outcome measures: Final 10 research priorities. Results: The 665 respondents to the initial survey provided 1698 research questions. Thirteen were out‐of‐scope and removed; remaining 1685 were then consolidated to form 147 summary questions. Following literature search and discussion with the steering group, 37 questions remained for the second survey, which 235 people responded. The top ten priorities agreed upon in the workshop covered themes of improved understanding of pathophysiologlogy, improving health services, and managing long‐term effects of smell/taste disorders. The most important research question agreed was "How can we further our understanding of the mechanism of disease in the nerve pathways that affect smell and taste disorders, including where parosmia and phantosmia exist." Conclusion: We report the top 10 research priorities in smell and taste disorders. These priorities will now empower researchers to secure research funding and provide the basis of the FifthSense research hub. [ABSTRACT FROM AUTHOR]

Introduction: Olfactory testing must be culturally adapted to be relevant to the target population. This study aimed to validate the Sniffin' Sticks test for the UK setting. Methods: A cohort study was conducted at a tertiary olfactory dysfunction clinic. Phase 1—healthy volunteers underwent the original German identification test followed by a UK adapted version. Phase 2—patients with olfactory dysfunction underwent the extended smell test (TDI) including the new descriptors. Outcome measures included differences in identification test (phase 1), retest reliability and differences in scores before and after treatment. Results: A total of 31 healthy volunteers and 87 patients were recruited (6 and 31 males, respectively). Phase 1—mean identification scores showed a small improvement after descriptor adaptations (13.77 and 14.57, p = 0.0029). Phase 2—41 untreated participants had a mean identification score of 7.31 at both intervals (95% CI: − 1.15 to 1.15, p > 0.999). The mean change in treated participants was 1.88 (0.70 to 3.06, p = 0.0224). TDI score difference between treated and untreated groups was 6.63 (2.48 to 10.79, p = 0.0023). The intraclass correlation coefficient for untreated patients was high for both TDI score (ICC = 0.82, 95% CI 0.57 to 0.93) and identification score (ICC = 0.80, 0.52 to 0.93); CIs suggest the reliability is moderate to excellent. Conclusions: This study confirms the validity of the descriptor adaptations of the identification component of the Sniffin' Sticks test to distinguish between health and disease. Implications: The Sniffin' Sticks test can now reliably be used for clinical assessment of British patients, modifying only the descriptors. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To explore the relative frequency of a family history of cholesteatoma in patients with known cholesteatoma, and whether bilateral disease or earlier diagnosis is more likely in those with a family history. Associations between cleft lip or palate and bilateral disease and age of diagnosis were also explored. Design: An online survey of patients with diagnosed cholesteatoma was conducted between October 2017 and April 2019. Participants: The sample consisted of patients recruited from two UK clinics and self‐selected respondents recruited internationally via social media. Main outcome measures: Side of cholesteatoma, whether respondents had any family history of cholesteatoma, age of diagnosis and personal or family history of cleft lip or palate were recorded. Results: Of 857 respondents, 89 (10.4%) reported a positive family history of cholesteatoma. Respondents with a family history of cholesteatoma were more likely to have bilateral cholesteatoma (P =.001, odds ratio (OR) 2.15, 95% confidence interval (CI) 1.35‐3.43), but there was no difference in the age of diagnosis (P =.23). Those with a history of cleft lip or palate were not more likely to have bilateral disease (P =.051, OR 2.71, CI 1.00‐7.38), and there was no difference in age of diagnosis (P =.11). Conclusion: The relatively high proportion of respondents that reported a family history of cholesteatoma offers supporting evidence of heritability in cholesteatoma. The use of social media to recruit respondents to this survey means that the results cannot be generalised to other populations with cholesteatoma. Further population‐based research is suggested to determine the heritability of cholesteatoma. [ABSTRACT FROM AUTHOR]

Objectives: There are large numbers of patients with olfactory disturbance in the UK and shortfalls in assessment and support amongst mainstream practice in both primary and secondary care leading to significant quality‐of‐life impairment and potential missed diagnoses. The aim of this study was to determine the key themes which can be identified from the accounts of anosmia sufferers and to identify important areas to target for future research or service development. Design: Qualitative analysis of written patient accounts from patients corresponding with a tertiary smell and taste clinic in the UK. This qualitative study utilised unstructured written patient accounts from consenting patients experiencing olfactory disturbances received by the smell and taste clinic. Framework analysis was performed using Nvivo 10 software. Setting: Tertiary smell and taste clinic. Participants: Consenting patients who contacted the smell and taste clinic with accounts of their experiences. Main outcome measures: Themes generated by qualitative analysis with Nvivo software. Results: Accounts submitted by 71 participants were included in the analysis; age range 31‐80 years, 45 females, 26 males. Themes identified include negative emotional impact, feelings of isolation, impaired relationships and daily functioning, impact on physical health and the difficulty and financial burden of seeking help. Conclusions: Olfactory disturbances have a wide‐ranging impact on the lives of sufferers, compounded by a lack of knowledge of the disorder amongst clinicians. There is a role for further support and education both for sufferers and for clinicians, as well as a need to improve our understanding of olfactory disturbance. [ABSTRACT FROM AUTHOR]

Objectives: To explore general practitioner (GP) and ears, nose and throat (ENT) specialist perspectives of current treatment strategies for chronic rhinosinusitis (CRS) and care pathways through primary and secondary care., Design: Semi-structured qualitative telephone interviews as part of the MACRO programme (Defining best Management for Adults with Chronic Rhinosinusitis) SETTING: Primary care and secondary care ENT outpatient clinics in the UK., Participants: Twelve GPs and 9 ENT specialists consented to in-depth telephone interviews. Transcribed recordings were managed using NVivo software and analysed using inductive thematic analysis., Main Outcome Measures: Healthcare professional views of management options and care pathways for CRS., Results: GPs describe themselves as confident in recognising CRS, with the exception of assessing nasal polyps. In contrast, specialists report common missed diagnoses (eg, allergy; chronic headache) when patients are referred to ENT clinics, and attribute this to the limited ENT training of GPs. Steroid nasal sprays provide the foundation of treatment in primary care, although local prescribing restrictions can affect treatment choice and poor adherence is perceived to be the causes of inadequate symptom control. Symptom severity, poor response to medical treatment and patient pressure drive referral, although there is uncertainty about optimal timing. Treatment decisions in secondary care are based on disease severity, polyp status, prior medical treatment and patient choice, but there is major uncertainty about the place of longer courses of antibiotics and the use of oral steroids. Surgery is regarded as an important treatment option for patients with severe symptoms or with nasal polyps, although timing of surgery remains unclear, and the uncertainty about net long-term benefits of surgery makes balancing of benefits and risks more difficult., Conclusions: Clinicians are uncertain about best management of patients with CRS in both primary and secondary care and practice is varied. An integrated care pathway for CRS is needed to improve patient management and timely referral., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2018. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)