当我们庆祝英国第一个接受针对Covid-19的有效疫苗的重要里程碑时，很容易忘记该病毒为许多生命造成的破坏。然而，在初次感染SARS-COV-2病毒几个月后，英国成千上万的人仍在与症状作斗争。新闻文章和电视纪录片已经揭示了这些“长期相关”患者的日常挣扎，但到目前为止，关于这种疾病的生活经历的研究很少。
A新研究由牛津大学学者团队与来自英国各地的114人合作，与Long Covid合作，他们系统地探索了这种新颖疾病的故事及其患者所面临的挑战。
除了症状及其对人们日常生活的影响外，该研究还揭示了有关NHS护理的可用性和一致性的重大问题。它确定了必须学到的重要课程，以减少对个人及其家人，医疗保健系统和更广泛经济的长期影响。
什么是长期的covid？
长Covid是病人给COVID-19年代ymptoms that don’t resolve within the expected 4-week time frame. The number of people who develop it is contested, since many people who had Covid-19 were not formally tested, were not admitted to hospital (or even assessed in A&E) and their continuing suffering remains undocumented.
Importantly, long Covid can affect anyone, even working-age individuals who were previously fit and well. Symptoms are diverse and confusing. Breathlessness, overwhelming fatigue, and muscle pains are common. Many people suffer problems with attention or memory, chest pains, persistent cough, blood clots, gastric reflux, tingling sensations, rashes, and other ‘surprising’ problems.
这些症状中的某些或全部可能是由于潜在的器官损害造成的，因此应在需要时正确评估患者并接受适当的检查。但是，许多人有正常的基本测试，例如血液检查和X射线以及其问题的根本原因尚不清楚。许多人的原因和最佳治疗仍不清楚。
学习团队做了什么？
Led byTrish Greenhalgh教授，，，，the study team recruited 114 patients with long Covid using social media. They facilitated individual interviews and focus groups where participants shared their experiences of the illness’ invasion of their lives and their encounters with the NHS and healthcare professionals.
研究发现了什么？
Long Covid is a serious, uncertain and confusing illness with fluctuating, sometimes severe, symptoms in every part of the body
Long Covid is a serious, uncertain and confusing illness with fluctuating, sometimes severe, symptoms in every part of the body. Many people were trapped in cycles of small improvements and crashing relapses and struggled to come to terms with the uncertainty and debilitation caused by the disease.
One participant captured the devastating impact on his personal life and occupational prospects:
‘我无法回去工作，然后我变得多余了。我什至无法想象我将如何找到一份新工作。在上一周[…]终于有可能有一天能找到新工作。但是我的生活完全不像它，这并不是我真正想要的生活。我需要改进。’
长期的库维德患者发现它很复杂，困难和疲惫无法获得NHS护理
长期的库维德患者发现它很复杂，困难和疲惫无法获得NHS护理。They experienced confusion between the GP and 111 services, difficulty with remote or online consultations, a lack of continuity, and uninformed clinicians. Patients therefore often found themselves with no choice but to manipulate or seek out their own pathways for accessing care – often private or through personal contacts.
Some long Covid patients reported care with concerning levels of quality and safety
Some long Covid patients reported care with concerning levels of quality and safety. Many had experienced encounters with ignorant or disbelieving clinicians, who dismissed their concerns. For example, a near heart-breaking account recounted how the participant was so breathless he called his GP whilst lying prone on his living room floor only to be told he didn’t sound very breathless and should take medication for anxiety. However, some participants did describe empathic, warm, caring clinicians who were supportive, and helpful, listening to their stories and sharing their distress – companions in their dreadful journeys.
长期共同服务的建议质量原则
Channeling the anger, frustration, fear, and hopelessness expressed by participants, the study team worked closely with a small group of sufferers to identify what would make for a high quality long Covid service:长covid的ABCDEF。
These includeAccess to appropriate care that is not overlyburdensome for patients and families, withClinical responsibility held by one clinician. An individualized, multi-d应该遵循使用iSciparinary方法e基于vidence的标准F与患者合作的知识和服务的开发。
正如一位作者所描述的那样，‘与这样有力的故事要讲述的那些坚定的患者一起工作是一种谦卑和情感的经历。可悲的是，改变他们的许多经验为时已晚，但希望我们的建议可以为未来长期的库维德患者改善做出贡献。’
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