“Finding the right GP”: a qualitative study of the perspectives of people with long-COVID
The problem
An unknown proportion of people who had an apparently mild COVID-19 infection in Spring 2020 continue to suffer with persistent symptoms, including chest pain and palpitations, shortness of breath, muscle and joint aches and pains, paraesthesia, headaches, cognitive impairment (‘brain fog’) and fatigue. Post-acute COVID-19 (or ‘long-COVID’) seems to be a multisystem disease, and people struggling with these persistent symptoms are referring to themselves as ‘long-haulers’.
Approach
University ethics approval gained. Qualitative methods with semi-structured interviews to explore the perspectives of people with persistent symptoms following COVID-19 infection. Participants were recruited through advertisements on social media. Interviews were conducted by telephone or video platform, were digitally recorded, and transcribed with consent. Thematic analysis was conducted utilising constant comparison techniques. People with experience of persisting symptoms contributed to study design, documents for ethics application, data analysis and interpretation of findings.
The learning
We report analysis of 24 interviews. The main themes we will report include: the ‘hard and heavy work’ of enduring and managing complex and changing symptoms; needing to find answers; the hard work of accessing care, including investigation of symptoms and exclusion of serious pathology; living with uncertainty, helplessness and fear, particularly over whether recovery is possible; the importance of finding the right general practitioner (GP) who provides the understanding, empathy and support needed; and, finally, recovery and rehabilitation - what help is out there?
Why it matters
Post-acute COVID is a new syndrome, with people struggling with symptoms which are complex and unexplained. That doctors were initially unaware of the problem and uncertain how to respond, impacted on patients. People with post-acute COVID need to be believed and require their GPs demonstrate empathy, but also consider what investigations or referrals are needed. In addition, GPs should offer long-term support and monitoring to this patient group.
Presenting author:
Carolyn Chew-Graham, Professor of General Practice Research, School of Medicine, Keele University, ST5 5BG. c.a.chew-graham@keele.ac.uk @CizCG
Co-authors:
Tom Kingstone, Lecturer in Mental Health and Wellbeing, School of Medicine, Keele University, ST5 5BG. t.kingstone@keele.ac.uk @TomKingstone
Anna Kathryn Taylor, Visiting Academic Clinical Fellow in Psychiatry, School of Medicine, Leeds Institute of Health Sciences, Faculty of Medicine and Health, University of Leeds, LS2 9JT. annaktaylor@doctors.org.uk. @Anna_K_Taylor
Catherine O’Donnell, Professor of Primary Care Research & Development, Institute of Health & Wellbeing, University of Glasgow. Kate.O’Donnell@glasgow.ac.uk @odo_kate
Helen Atherton, Associate Professor of Primary Care Research, Unit of Academic Primary Care, Warwick Medical School. h.atherton@warwick.ac.uk @h_atherton
David Blane, Clinical Research Fellow, Institute of Health & Wellbeing, University of Glasgow. David.blane@glasgow.ac.uk @dnblane