Patient and public involvement within epidemiological studies of long COVID in the UK.
Patient and public involvement within epidemiological studies of long COVID in the UK.
复制标题
患者和公众参与英国长期新冠病毒流行病学研究。
DOI：
10.1038/s41591-023-02251-5
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发表时间：
2023
期刊：
影响因子：
82.9
通讯作者：
Routen A
中科院分区：
文献类型：
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作者：
Routen A
英国资助了几项主要的流行病学研究，目的是更好地了解SARS-CoV-2感染后持续症状的流行病学。其中9项研究的研究人员于2021年成立了国家长冠状病毒研究工作组，以分享关键发现和方法发展，并探索跨项目的工作方式。其中七项研究与不同的公众和患者成员以及支持团体进行了实质性的合作，并继续创建参与者参与小组或专门针对其研究的小组（表1）。大量长期感染COVID - 2的人，个人和支持团体参与这些研究的意愿，以及在大流行控制措施期间开展工作的障碍，为患者和公众参与（PPI）提供了独特的机遇和挑战。PPI成功的一个特殊例子是非住院个体的长期COVID治疗（TLC）研究3，在该研究中，患者伴侣确定需要开发新的长期COVID症状负担问卷（SBQ-LC） 4。长COVID的个人积极参与SBQ项目内容的生成，并协助招募。SBQ-LC已经在50个国家获得了90多次许可。除了这一重要贡献之外，患者合作伙伴还积极合作进行了一项研究，以测试在社区远程提供非药物、自我管理干预的可行性和可接受性，形成研究设计并共同选择干预资源。
Several major epidemiological studies have been funded in the UK with the goal of better understanding the epidemiology of persistent symptoms following SARS-CoV-2 infection. Investigators from nine of these studies formed the National Long COVID Research Working Group in 2021 to share key findings and methodological developments and explore ways of working across projects 1. Seven of these studies have worked substantively with diverse public and patient members and support groups, and have gone on to create participant involvement groups or panels specific to their research (Table 1). The large volume of people living with long COVID 2 and the willingness of individuals and support groups to engage with these studies, as well as the barriers to operating during periods of pandemic control measures, have provided unique opportunities and challenges for patient and public involvement (PPI).A particular example of the success of PPI is the Therapies for Long COVID in nonhospitalized individuals (TLC) study 3, during which patient partners identified the need to develop a new Symptom Burden Questionnaire for Long COVID (SBQ-LC) 4. Individuals with long COVID were actively involved in generating item content for the SBQ and assisted with recruitment. The SBQ-LC has since been licensed more than 90 times across 50 countries. In addition to this important contribution, patient partners also actively coproduced a study to test the feasibility and acceptability of delivering non-pharmacological, self-management interventions remotely in the community, shaping the study design and co-selecting intervention resources.