PDF(Pubmed)
Abstract：
BACKGROUND: The high incidence of COVID-19 globally has led to a large prevalence of Long COVID but there is a lack of evidence-based treatments. There is a need to evaluate existing treatments for symptoms associated with Long COVID. However, there is first a need to evaluate the feasibility of undertaking randomised controlled trials of interventions for the condition. We aimed to co-produce a feasibility study of non-pharmacological interventions to support people with Long COVID.
METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.
RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.
CONCLUSIONS: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.
The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people’s health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.
METHODS: A consensus workshop on research prioritisation was conducted with patients and other stakeholders. This was followed by the co-production of the feasibility trial with a group of patient partners, which included the design of the study, the selection of interventions, and the production of dissemination strategies.
RESULTS: The consensus workshop was attended by 23 stakeholders, including six patients. The consensus from the workshop was to develop a clinical trial platform that focused on testing different pacing interventions and resources. For the co-production of the feasibility trial, patient partners selected three pacing resources to evaluate (video, mobile application, and book) and co-designed feasibility study processes, study materials and undertook usability testing of the digital trial platform.
CONCLUSIONS: In conclusion, this paper reports the principles and process used to co-produce a feasibility study of pacing interventions for Long COVID. Co-production was effective and influenced important aspects of the study.
The World Health Organisation defines Long COVID as a condition which impacts people 3 months after they first had COVID-19. Some of the symptoms that characterise Long COVID symptoms include fatigue, breathlessness and brain fog. These symptoms have a major impact on people’s health and quality of life. Today, over 2 million people in the United Kingdom suffer from Long COVID and there is a lack of drugs and non-drugs treatment. However, some non-drugs treatments which aim to manage fatigue in other conditions, such as pacing, could be used with people with Long COVID. In this paper, we report how we co-produced a study which tested whether or not it is feasible for people who have Long COVID to use a pacing resource and report their symptoms using an electronic platform. After a meeting to review existing non-drugs treatments, the research team and a group of patient partners agreed on co-developing a clinical trial platform to test different pacing resources. The research team then met with the patient partners twice a week to co-design the study during which people with Long COVID will use the pacing resources and report their symptoms. They also co-designed the study documents and how to report its results. Co-producing a study with patient partners was effective and influenced important aspects of the study.
摘要：
背景：全球COVID-19的高发病率导致长型COVID的高患病率，但缺乏循证治疗。有必要评估与长型COVID相关症状的现有治疗方法。然而,首先需要评估对该疾病进行干预的随机对照试验的可行性。我们的目标是共同开展一项非药物干预措施的可行性研究，以支持长型COVID患者。
方法：与患者和其他利益相关者进行了关于研究优先级的共识研讨会。随后与一组患者合作伙伴共同制作了可行性试验，其中包括研究的设计，干预措施的选择，以及传播策略的制定。
结果：23个利益相关者参加了共识研讨会，包括6名患者。研讨会的共识是开发一个专注于测试不同起搏干预措施和资源的临床试验平台。对于可行性试验的联合生产，患者合作伙伴选择了三个起搏资源进行评估(视频，移动应用程序，和书籍)和共同设计的可行性研究过程，研究材料，并对数字试验平台进行可用性测试。
结论：结论：本文报道了用于联合开展LongCOVID起搏干预可行性研究的原则和过程.联合生产是有效的，并影响了研究的重要方面。
世界卫生组织将长型COVID定义为一种在首次感染COVID-193个月后会影响人们的疾病。长型COVID症状的一些特征包括疲劳，呼吸困难和脑雾。这些症状对人们的健康和生活质量有重大影响。今天,在英国，超过200万人患有长型COVID，缺乏药物和非药物治疗。然而,一些非药物治疗旨在管理其他条件下的疲劳，比如起搏，可以和长COVID的人一起使用。在本文中,我们报告了我们如何共同开展一项研究,该研究测试了长型COVID患者使用起搏资源并使用电子平台报告其症状是否可行.在审查现有非药物治疗的会议之后，研究团队和一组患者合作伙伴同意共同开发一个临床试验平台来测试不同的起搏资源.然后，研究小组每周两次与患者伙伴会面，共同设计这项研究，在此期间，患有长型COVID的人将使用起搏资源并报告他们的症状。他们还共同设计了研究文件以及如何报告其结果。与患者伙伴共同进行研究是有效的，并影响了研究的重要方面。
方法：与患者和其他利益相关者进行了关于研究优先级的共识研讨会。随后与一组患者合作伙伴共同制作了可行性试验，其中包括研究的设计，干预措施的选择，以及传播策略的制定。
结果：23个利益相关者参加了共识研讨会，包括6名患者。研讨会的共识是开发一个专注于测试不同起搏干预措施和资源的临床试验平台。对于可行性试验的联合生产，患者合作伙伴选择了三个起搏资源进行评估(视频，移动应用程序，和书籍)和共同设计的可行性研究过程，研究材料，并对数字试验平台进行可用性测试。
结论：结论：本文报道了用于联合开展LongCOVID起搏干预可行性研究的原则和过程.联合生产是有效的，并影响了研究的重要方面。
世界卫生组织将长型COVID定义为一种在首次感染COVID-193个月后会影响人们的疾病。长型COVID症状的一些特征包括疲劳，呼吸困难和脑雾。这些症状对人们的健康和生活质量有重大影响。今天,在英国，超过200万人患有长型COVID，缺乏药物和非药物治疗。然而,一些非药物治疗旨在管理其他条件下的疲劳，比如起搏，可以和长COVID的人一起使用。在本文中,我们报告了我们如何共同开展一项研究,该研究测试了长型COVID患者使用起搏资源并使用电子平台报告其症状是否可行.在审查现有非药物治疗的会议之后，研究团队和一组患者合作伙伴同意共同开发一个临床试验平台来测试不同的起搏资源.然后，研究小组每周两次与患者伙伴会面，共同设计这项研究，在此期间，患有长型COVID的人将使用起搏资源并报告他们的症状。他们还共同设计了研究文件以及如何报告其结果。与患者伙伴共同进行研究是有效的，并影响了研究的重要方面。
