Newcastle University Faculty of Medical Sciences, Newcastle upon Tyne, UK.
Fifth Sense, Barrow-on-Furness, UK.
Clin Otolaryngol. 2021 Nov;46(6):1213-1222. doi: 10.1111/coa.13818. Epub 2021 Jun 15.
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.
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.
Primary, secondary and tertiary care.
Any members of the public self-reporting a smell/taste disorder were invited to participate.
The survey captured information including experience of getting consultations and referrals to medical professionals, treatments offered, costs incurred and related problems with mental health.
Of 673 participants; 510 female, 160 male, three 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.
There is an unmet need for these patients in accessing health care 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.
嗅觉/味觉障碍是一种常见但被低估、研究不足和治疗不足的感觉丧失，也是降低寿命的独立风险因素。本研究旨在描述有这些障碍的患者寻求帮助的经历。
这项研究是由患者与临床医生通过专门的研讨会共同设计的，并作为一项横断面调查进行，以捕捉国际上公共和私人医疗保健环境中的经验。
初级、二级和三级保健。
任何自我报告有嗅觉/味觉障碍的公众成员都被邀请参加。
该调查收集了包括寻求医疗专业人员咨询和转诊、提供的治疗、产生的费用以及与心理健康相关的问题等信息。
在 673 名参与者中，有 510 名女性、160 名男性、3 名未说明，自我报告的病因包括鼻-鼻窦疾病（24%）、特发性（24%）和病毒性嗅觉功能障碍（22%）；真正的味觉障碍通常很少见。医疗专业人员未能认识到这个问题是一个关键问题——分别有 64%、76%和 47%的全科医生、耳鼻喉科专家和神经科医生承认了这一点。其他问题包括反复无效的治疗、难以获得二级/三级保健转诊、心理健康问题（60%）以及平均个人花费 421 英镑寻求咨询和治疗。然而，参与者是自我选择的，但他们确实代表了那些正在为自己的障碍寻求帮助和干预的人。
这些患者在获得医疗保健方面存在未满足的需求，包括明确需要改善耳鼻喉科、全科医学和其他专业的医学专业教育和参与，以消除他们目前面临的障碍。
