A cross-sectional study exploring patient experiences, unmet needs and desired support in those with olfactory dysfunction

Abstract

Objectives: Smell and taste disorders (SATDs) are frequently overlooked despite growing prevalence. They profoundly impact quality of life. Effective therapies for SATDs remain scarce. This survey aimed to assess patient views surrounding the support available at the time of onset of SATDs, and what further support is needed. Design and Setting: This was a cross-sectional study consisting of an online survey circulated via the UK charity SmellTaste (known as Fifth Sense until a rebrand in May 2025), exploring features and impacts of SATDs, and opinions surrounding support available, and any further support felt to be necessary by those formally diagnosed or self-identifying with SATDs. Main Outcomes: Survey questions were grouped largely into the domains of demographics, features of olfactory issues, impact of disorder, and support network. Results: A total of 410 participants completed the questionnaire, with the majority being women. When asked how olfactory dysfunction made participants feel, common responses included: ‘sad’, ‘devastated’, ‘angry’, ‘anxious’, ‘depressed’, ‘isolated’ and ‘grief’. Family was reported as the greatest source of support when diagnosed with SATDs (partner/spouse, 36.4%; other family member, 15.1%) followed closely by SmellTaste (34%). Only 2.5% reported General Practitioners as their greatest source of support, with many participants reporting that primary care providers could not provide adequate help, leaving them to seek advice elsewhere (support groups, family, friends and self-investigation). Further support, covering medical, psychological and social interventions, was considered important. Conclusion: Given the complexity of issues experienced and the lack of formal support available for people with SATDs, there is a clear need for an intervention addressing unmet support needs.

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