Thematic analysis to explore patients’ experiences with long COVID-19: a conceptual model of symptoms and impacts on daily lives

Abstract

ObjectivesThere is limited qualitative research on patients’ experiences with long COVID-19, and how specific symptoms impact their daily lives. The study aimed to understand patients’ lived experiences of long COVID-19 and to develop a conceptual model representing the symptoms and their impact on overall quality of life.SettingQualitative study consisting of a comprehensive literature review, and in-depth clinician and patient semistructured interviews.ParticipantsForty-one adult patients with long COVID-19, of whom 18 (44%) were recruited through Regeneron Pharmaceuticals’s clinical trials and 23 (56%) through recruitment agencies; 85.4% were female and 73.2% were White. Five independent clinicians treating patients with long COVID-19 were interviewed. Concept saturation was also assessed.Primary and secondary outcomesInterview transcripts were analysed thematically to identify concepts of interest spontaneously mentioned by patients, including symptoms and their impacts on daily life, to guide the development of the conceptual model.ResultsFindings from the literature review and clinician and patient interviews resulted in the development of a conceptual model comprising two overarching domains: symptoms (upper respiratory tract, lower respiratory tract, smell and taste, systemic, gastrointestinal, neurocognitive and other) and impacts (activities of daily living, instrumental activities of daily living, physical impacts, emotional, social/leisure activities and professional impacts). Saturation was achieved for the reported impacts. The symptoms reported were heterogenic; neurocognitive symptoms, such as numbness, ringing in ears, haziness, confusion, forgetfulness/memory problems, brain fog, concentration, difficulties finding the right word and challenges with fine motor skills, were particularly pertinent for several months.ConclusionThe conceptual model, developed based on patient experience data of long COVID-19, highlighted numerous symptoms that impact patients’ physical and mental well-being, and suggests humanistic unmet needs. Prospective real-world studies are warranted to understand the pattern of long COVID-19 experienced in larger samples over longer periods of time.

Exploring the perceptions and experiences of community rehabilitation for Long COVID from the perspectives of Scottish general practitioners’ and people living with Long COVID: a qualitative study

“…The negative impact of LC on the health and quality of life of our study participants is in keeping with other studies 35 and demonstrates the influence of LC on a sample living in Scotland almost 3 years on from the start of the pandemic. The persisting prevalence and impact of LC on people’s lives further emphasises the need for support and services such as community rehabilitation to be available, in keeping with recommendations and research findings.…”

“…Issues with promotion of services, clarity of pathways and interdisciplinary communication between GPs and rehabilitation professionals have been reported previously. 38 40 The findings of this study suggest that further improvements in communication and collaborative working 35 may be required to enhance access to community rehabilitation for people with LC. Indeed, the finding that prior knowledge of rehabilitation, and being a healthcare professional facilitated access to community rehabilitation is further evidence that successfully navigating the referral system is challenging.…”