A longitudinal perspective on living with and accessing healthcare for long-COVID in Scotland: a qualitative study

Conference:

SAPC ASM 2023 - Brighton

Talk Code:

2E.2

Presenter:

Susan Browne

Co-authors:

Susan Browne, David Blane, Kate O’Donnell, Claire Hastie, Jill Pell and the CISS team

Author institutions:

General Practice and Primary Care, University of Glasgow, Public Health, University of Glasgow

Problem

There is limited research on the nature and impact of the long-term effects of COVID-19. We aim to explore the impact that ongoing symptoms have on people with long-COVID and their experience of health care at two time points six months apart

Approach

This work is part of a larger study, the long-COVID in Scotland study (CISS). Scottish adults who had a positive COVID-19 test received an SMS message inviting them to answer questions about their health before and after COVID-19. A group of survey participants were recruited to this qualitative sub-study and took part in an in-depth interview exploring the impact of ongoing symptoms on daily life. Forty-five people were interviewed and eighteen of these were reinterviewed 6 months later to provide a novel longitudinal perspective. This presentation focuses on the eighteen people who were interviewed at two time points.

Findings

Despite living with debilitating physical and cognitive symptoms, some people had not consulted any healthcare professional perceiving that little could be done to help. Those who did attempt to access healthcare describe a fragmented response: some felt ‘dismissed’ by GPs; others described an arduous cycle of undergoing various investigations, receiving normal test results, organising more consultations and more tests, and so on. Definitive diagnoses or effective treatments eluded most interviewees. The impact of long-COVID on people’s lives was often devastating with catastrophic effects on finances, careers, relationships and mental health. The desire to have ‘their life back’ was universal. Six months later a diverse picture emerges: for some symptoms have gradually improved while others experience no improvement or worsening symptoms. Fatigue, breathlessness, and brain fog are common enduring symptoms. Brain fog proves most difficult to live with and accept. Worsening symptoms are sometimes attributed to a second COVID-19 infection. Mental health issues are more of a feature now with the long-term aspect of long-COVID, and frustrations about a lack of treatment options, fueling anxiety and depression. Effective treatment remains elusive - people are even more reluctant to consult after being previously dismissed by HCPs or because previous consultations and investigations proved fruitless. An exception to this is treatment from physiotherapists, in the form of breathing exercises and advice on pacing to manage fatigue, which is well received. People feel dismissed by their personal networks (as well as by HCPS) as they recount comments such as ‘we’ve all had COVID’ and ‘maybe you’ve decided you don’t want to work’. They describe a mismatch between their experience of life changing symptoms and people’s understanding of long-COVID.

Consequences

GPs are well placed to support people with long-COVID. However, both patients and GPs need support, and other services to refer on to, to deal with this new, chronic condition.

Submitted by:

Susan Browne

Funding acknowledgement:

The COVID in Scotland Study (CISS) is undertaken in collaboration with Public Health Scotland and the NHS in Scotland, and funded by the Scottish Government Chief Scientist Office.