Patient Experience Research Centre, School of Public Health, Imperial College London, London, United Kingdom.
School of Public Health, Imperial College London, London, United Kingdom.
PLoS One. 2023 Jan 26;18(1):e0280943. doi: 10.1371/journal.pone.0280943. eCollection 2023.
Long COVID is a patient-made term describing new or persistent symptoms experienced following SARS-CoV-2 infection. The Real-time Assessment of Community Transmission-Long COVID (REACT-LC) study aims to understand variation in experiences following infection, and to identify biological, social, and environmental factors associated with Long COVID. We undertook a pilot interview study to inform the design, recruitment approach, and topic guide for the REACT-LC qualitative study. We sought to gain initial insights into the experience and attribution of new or persistent symptoms and the awareness or perceived applicability of the term Long COVID.
People were invited to REACT-LC assessment centres if they had taken part in REACT, a random community-based prevalence study, and had a documented history of SARS-CoV-2 infection. We invited people from REACT-LC assessment centres who had reported experiencing persistent symptoms for more than 12 weeks to take part in an interview. We conducted face to face and online semi-structured interviews which were transcribed and analysed using Thematic Analysis.
We interviewed 13 participants (6 female, 7 male, median age 31). Participants reported a wide variation in both new and persistent symptoms which were often fluctuating or unpredictable in nature. Some participants were confident about the link between their persistent symptoms and COVID-19; however, others were unclear about the underlying cause of symptoms or felt that the impact of public health measures (such as lockdowns) played a role. We found differences in awareness and perceived applicability of the term Long COVID.
This pilot has informed the design, recruitment approach and topic guide for our qualitative study. It offers preliminary insights into the varied experiences of people living with persistent symptoms including differences in symptom attribution and perceived applicability of the term Long COVID. This variation shows the value of recruiting from a nationally representative sample of participants who are experiencing persistent symptoms.
长新冠是一个由患者创造的术语，用于描述在 SARS-CoV-2 感染后出现的新的或持续存在的症状。实时评估社区传播-长新冠（REACT-LC）研究旨在了解感染后体验的变化，并确定与长新冠相关的生物学、社会和环境因素。我们进行了一项试点访谈研究，为 REACT-LC 定性研究的设计、招募方法和主题指南提供信息。我们试图初步了解新的或持续存在的症状的体验和归因，以及对长新冠术语的认识或感知适用性。
如果他们参加了 REACT，即一项随机的基于社区的流行性病学研究，并有记录的 SARS-CoV-2 感染史，我们邀请 REACT-LC 评估中心的人员参加访谈。我们邀请了在 REACT-LC 评估中心报告持续症状超过 12 周的人员参加访谈。我们进行了面对面和在线半结构化访谈，转录并使用主题分析进行分析。
我们采访了 13 名参与者（6 名女性，7 名男性，中位数年龄 31 岁）。参与者报告了新的和持续存在的症状的广泛变化，这些症状的性质往往是波动的或不可预测的。一些参与者对他们持续存在的症状与 COVID-19 之间的联系有信心；然而，其他人对症状的根本原因不清楚，或者认为公共卫生措施（如封锁）的影响起了作用。我们发现对长新冠术语的认识和感知适用性存在差异。
本试点为我们的定性研究的设计、招募方法和主题指南提供了信息。它提供了初步的见解，了解了患有持续症状的人的不同体验，包括症状归因和对长新冠术语的感知适用性的差异。这种差异表明，从经历持续症状的具有代表性的全国性参与者样本中招募的价值。
