'Reluctant pioneer': A qualitative study of doctors' experiences as patients with long COVID

Abstract

Background The coronavirus disease (COVID‐19) pandemic has had far‐reaching effects upon lives, healthcare systems and society. Some who had an apparently 'mild' COVID‐19 infection continue to suffer from persistent symptoms, including chest pain, breathlessness, fatigue, cognitive impairment, paraesthesia, muscle and joint pains. This has been labelled 'long COVID'. This paper reports the experiences of doctors with long COVID. Methods A qualitative study; interviews with doctors experiencing persistent symptoms were conducted by telephone or video call. Interviews were transcribed and analysis conducted using an inductive and thematic approach. Results Thirteen doctors participated. The following themes are reported: making sense of symptoms, feeling let down, using medical knowledge and connections, wanting to help and be helped, combining patient and professional identity. Experiencing long COVID can be transformative: many expressed hope that good would come of their experiences. Distress related to feelings of being ‘let down’ and the hard work of trying to access care. Participants highlighted that they felt better able to care for, and empathize with, patients with chronic conditions, particularly where symptoms are unexplained. Conclusions The study adds to the literature on the experiences of doctors as patients, in particular where evidence is emerging and the patient has to take the lead in finding solutions to their problems and accessing their own care. Patient and Public contribution The study was developed with experts by experience (including co‐authors HA and TAB) who contributed to the protocol and ethics application, and commented on analysis and implications. All participants were given the opportunity to comment on findings.

Supporting Primary Care Professionals to Stay in Work During the COVID-19 Pandemic: Views on Personal Risk and Access to Testing During the First Wave of Pandemic in Europe

“…This seemed to be linked to how they saw their role as a healthcare professional. Recent studies described that some HCPs felt that they were expected to work in the face of unknown risk of infection, while not realising the potential longterm consequences of getting infected (27)(28)(29)(30). In our study, PCPs seemed to accept working during the pandemic if they perceived the risk to be low, felt that some risk was part of their job, or felt satisfaction from contributing to helping fight the pandemic.…”

Recommendations for the recognition, diagnosis, and management of long COVID: a Delphi study

“…At this point, a pool of doctors with lived experience of long COVID, combined with UK-based clinicians (of varying specialties) involved in service provision for long COVID, form a suitable expert group. 6 …”

“…At this point in our knowledge, a pool of doctors with lived experience of long covid, combined with UK-based clinicians (of varying specialities) involved in service provision for long covid, form a suitable expert group. 6 A call for panellists was placed on the "UK doctors #longcovid" support group, hosted by the social media platform Facebook. This is a closed group, exclusive to UK doctors with an interest in long covid, many of whom are seeing patients with long covid and/or have lived experience of the condition themselves (currently, approximately 1,100 members).…”

Chronic fatigue and post-exertional malaise in people living with long COVID

“…Healthcare professionals who are living with long COVID describe its trajectory as unpredictable, episodic and having a relapse-remitting nature [12][13][14]. Reports of persistent fatigue alongside fluctuating symptoms that worsen unpredictably or in response to exertion have led to comparisons between long COVID and other post-viral conditions, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [5,6,[15][16][17].…”