Engaging Users in Smell Self-Care at Home

尽管已知嗅觉障碍与帕金森氏症、痴呆症和预期寿命缩短有关，但长期以来，人们一直忽视嗅觉障碍。慈善机构第五感（FS）最近开展的公众和患者参与工作表明，英国未能为这类患者提供良好的服务。它还表明需要更好的治疗和支持。在covid - 19大流行期间，这种缺乏支持的情况变得更加严重，使患者和医生难以为嗅觉障碍患者提供建议。这增加了与嗅觉丧失有关的心理健康问题。迄今为止，根据英国的感染率，近50万人有持续的嗅觉丧失或改变的症状（40周）。这些可能与其他长期感染covid的症状有关，如疲劳、记忆问题和脑雾。嗅觉训练，一种嗅觉护理，现在有几项研究表明它可以帮助恢复嗅觉功能。这在老年人中是非常真实的，他们的嗅觉会自然衰退。然而，目前的嗅觉训练方法仅限于浸泡在气味或精油罐中的笔。数字解决方案可以克服这些缺点，并实现数字嗅觉训练。这可以在多种环境中提供，包括医疗、护理院和私人住宅。后者是该项目的核心，即在家中实现气味自我护理（I-smell）。这个项目试图回答的一个关键问题是，人们如何以及为什么会接受I-smell，并在定期的日常锻炼中继续使用它？我们都知道，养成习惯是一件很困难的事情，而保持习惯就更难了。由于流感大流行，越来越多的人意识到更广泛的公众嗅觉护理的重要性，但当嗅觉工作或似乎再次“正常”工作时，它很容易被遗忘和丢失。我们将研究I-smell是如何融入日常生活的，以及其中的障碍。这将通过观察对人们生活质量和福祉的影响来衡量。我们将从选定的家庭中获得第一手的早期用户反馈，这些家庭将参与一项为期6个月的可行性研究，在他们的家中使用一种新颖的数字技术。我们的目标是建立一个清晰的理解，随着时间的推移，人们参与I-smell的潜在原因、观点和动机。这项可行性研究将为未来卫生和保健技术解决方案的设计提供信息，并为未来临床和人口试验的设计提供信息。它还将使我们能够探索未来家庭的设计，超越当前对能源、照明、温度和湿度等环境条件的控制。我们将考虑这种技术如何与现有的智能家居设备（如谷歌home或Alexa）配合使用。我们的长期愿景是在电子健康记录（EHR）中增加对我们嗅觉的自我监测记录（类似于听力和视力测试）。这将提供一个很好的机会，使治疗因人而异，并允许全科医生及时采取行动。例如，人工智能可以对数据进行分析，从而将帕金森病等疾病的诊断提前十年。引入气味自我护理的数字解决方案可以帮助维持和延长家庭独立生活，提高生活质量。

Smell disorders have long been neglected, despite known links to Parkinson's, dementia and to shorter life expectancy. Recent public and patient engagement work by the charity Fifth Sense (FS) has shown a failure to provide a good service for such patients in the UK. It also showed the need for better treatment and support.This lack of support has been made worse in the COVID-pandemic, leaving patients and doctors struggling to advise those affected by smell disorders. This adds to the mental health problems that are linked to the loss of smell. To date, based on UK infection rates, nearly 500,000 people have lasting symptoms of smell loss or change (>4 weeks). These may be linked to other Long-COVID symptoms such as fatigue, memory problems and brain fog.Smell training, a type of smell care, now has several studies showing it can help recover smell function. This is very true in older people, where people suffer a natural decline of the sense of smell. However, current smell training methods are limited to pens soaked in smells or jars of essential oils. A digital solution can overcome these drawbacks and enable digital smell training. This may be delivered in multiple settings including medical, care homes and private homes. The latter sits at the heart of this project's ambition, namely, to enable smell self-care (I-smell) at home. A key question this project will try to answer is how and why people will take on and accept I-smell, and keep using it in regular, daily exercises? We all know that it is hard work to set up a routine and keeping it, is even harder. Whilst more people are aware of the importance of smell care in the wider public due to the pandemic, it is easily forgotten and lost when the sense of smell works or seems to work 'well' again. We will study how I-smell is taken into daily routines and any barriers to that. This will be measured by looking at the impact on people's quality of life and wellbeing. We will gain first-hand early-stage user feedback from chosen households that will take part in a 6-month feasibility study using a novel digital technology in their homes. We aim to establish a clear understanding of peoples' underlying reasons, opinions and motivations to engage with I-smell over time. This feasibility study will inform the design of future health and care technology solutions, as well as informing the design of future clinical and population trials. It will also allow us to explore designs for tomorrow's home that go beyond the current focus on control of environmental conditions such as energy, lighting, temperature and humidity. We will consider how this type of technology will work with existing smart home devices such as Google Home or Alexa.Our long-term vision is to add self-monitoring records for our sense of smell (akin to hearing and sight tests) into electronic health records (EHR). This would provide a great opportunity to make treatments personal for individuals and allow timely actions by GPs. For example, data could be analysed by artificial intelligence that could lead to earlier diagnosis of diseases like Parkinson's by a decade. Introducing digital solutions for smell self-care can help maintain and extend independent living at home and improve the quality of life.