Awareness and perceptions of Long COVID among people in the REACT programme: Early insights from a pilot interview study

Abstract

Background 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. Methods 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. Results 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. Conclusion 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.

Constitution of Long COVID illness, patienthood and recovery: a critical synthesis of qualitative studies

“…All but two of the included studies were published in 2022 or 2023, yet the complexity of this question remains a concern. Studies defined Long COVID using clinical guidelines and criteria (such as those of the WHO and the UK National Institute for Health and Care Excellence),32 39 42 43 as well as on the basis of self-identification, noting the role of patient advocacy in the naming of Long COVID 33 35–37 40 41 44 45. The term Long COVID was generally used, though studies also acknowledged other labels such as ‘post-COVID syndrome’, ‘Post-Acute Sequelae of COVID-19’ and ‘long haulers’ 30 32–35 38–45.…”

“…Studies defined Long COVID using clinical guidelines and criteria (such as those of the WHO and the UK National Institute for Health and Care Excellence),32 39 42 43 as well as on the basis of self-identification, noting the role of patient advocacy in the naming of Long COVID 33 35–37 40 41 44 45. The term Long COVID was generally used, though studies also acknowledged other labels such as ‘post-COVID syndrome’, ‘Post-Acute Sequelae of COVID-19’ and ‘long haulers’ 30 32–35 38–45. One study explicitly distinguished terms, using ‘long COVID-19’ to describe ‘the lived patient experience’ and ‘post-COVID-19 syndrome’ to describe ‘the medically diagnosed condition’ 33…”

“…These working definitions of Long COVID informed participant inclusion criteria, which varied across the studies (table 1). Most studies identified a minimum number of weeks that participants must have experienced persistent or new symptoms after an acute illness (usually 4 or 12 weeks) 30–32 34–36 38 39 42 44. Some also stated preference for confirmed SARS-CoV-2 infection, such as through a positive test or a diagnosis from a clinician 32 35 44.…”

Barriers to healthcare access: findings from a co-produced Long Covid case-finding study

“…3 Long Covid can cause varying symptoms and impact on daily life, including, but not limited to, fatigue, shortness of breath, headache, cognitive dysfunction, chest pain, muscle and joint pains, cough, disturbed sleep, and neuropsychiatric symptoms. 1,[4][5][6][7][8] These symptoms can have wide ranging negative social impacts that include inhibiting ability to engage in employment and creating financial burdens. 4,[9][10][11] Health inequalities exist between different population groups in England.…”

Barriers to healthcare access and experiences of stigma: Findings from a coproduced Long Covid case‐finding study

“…3 Long Covid can cause varying symptoms and impact on daily life, including, but not limited to, fatigue, breathlessness, headache, cognitive dysfunction, chest pain, muscle/joint pains, cough, disturbed sleep and neuropsychiatric symptoms. 1,[4][5][6][7][8] It can have wideranging negative social impacts that include inhibiting the ability to engage in employment and creating financial burdens. 4,[9][10][11] Health inequalities exist between different population groups in England.…”