Four Years in, What Are the Research Priorities for Long COVID? A Research Priority-Setting Partnership Between People With Lived Experience, Carers, Clinicians and Researchers

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES

Health Expectations Pub Date : 2024-10-24 DOI:10.1111/hex.70072

Aileen Grant, Emma Stage, David Blane, Helen Goss, Jane Ormerod, Stuart McIver, Edward Duncan, Gail Patel, Abi Campbell, Paul Manson, Ganesh Subramanian, Kay Cooper

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引用次数: 0

Abstract

Introduction

Long COVID is a life-limiting condition that affects 65 million people worldwide. It devastates lives with uncertain illness trajectories, and yet, there are many research uncertainties as there is a lack of understanding of its causes, effective treatments and management plans. We set out to identify current research priorities for people with Long COVID, carers, healthcare professionals and researchers.

Methods

A systematic literature review and previous Long COVID priority-setting exercises identified three broad under-researched areas of Long COVID research within the fields of Public Health and Health Services Research: symptoms; managing day-to-day life; and the emotional impact of Long COVID. We disseminated an elicitation survey that asked for research questions in these areas; responses were analysed and summarised into 42 research questions. A survey was then disseminated, asking respondents to prioritise these 42 questions. Workshops were held with people with Long COVID, carers, healthcare professionals and researchers to analyse responses and agree the top 10 priorities.

Results

The top priorities in order were pharmacological treatment of Long COVID; understanding the pathophysiology; nonpharmacological symptom management; improving public and professional understanding of Long COVID; understanding of the long-term risks of Long COVID; improving financial and social supports; improving understanding of postviral syndromes; diagnostics; service redesign/pathways; and the well-being of children with Long COVID.

Conclusion

Four years into the pandemic, there is an emphasis on the need for research on treatment, understanding and support for people living with Long COVID.

Patient and Public Contribution

People with Long COVID and carers were involved in the study design, survey design, dissemination, data analysis, interpretation and reviewing and editing the manuscript.

Abstract Image

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四年过去了，Long COVID 的研究重点是什么？一个由亲身经历者、护理者、临床医生和研究人员共同参与的研究优先事项制定合作项目。

简介长期慢性阻塞性肺气肿是一种限制生命的疾病，影响着全球 6500 万人。它以不确定的疾病轨迹摧残着人们的生活，然而，由于人们对其病因、有效治疗方法和管理计划缺乏了解，因此在研究方面存在许多不确定性。我们的目的是为长COVID患者、照护者、医护人员和研究人员确定当前的研究重点：方法：通过系统的文献综述和之前的长COVID优先研究项目确定了公共卫生和健康服务研究领域中长COVID研究不足的三大领域：症状、日常生活管理和长COVID对情绪的影响。我们发布了一项征集调查，征集这些领域的研究问题；我们对答复进行了分析，并将其归纳为 42 个研究问题。随后，我们又分发了一份调查问卷，要求受访者对这 42 个问题进行优先排序。与长期慢性阻塞性肺病患者、护理人员、医疗保健专业人员和研究人员一起举办了研讨会，对答复进行分析，并就 10 大优先事项达成一致：最优先考虑的问题依次是：长COVID的药物治疗；了解病理生理学；非药物症状管理；提高公众和专业人士对长COVID的认识；了解长COVID的长期风险；改善经济和社会支持；提高对病毒后综合征的认识；诊断；服务重新设计/路径；以及长COVID儿童的福祉：患者和公众的贡献：长COVID患者和照护者参与了研究设计、调查设计、传播、数据分析、解释以及审阅和编辑手稿。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.