Patient symptoms and experience following COVID-19: results from a UK-wide survey

Abstract

Objectives

To investigate the experience of people who continue to be unwell after acute COVID-19, often referred to as ‘long COVID’, both in terms of their symptoms and their interactions with healthcare.

Design

We conducted a mixed-methods analysis of responses to a survey accessed through a UK online post-COVID-19 support and information hub, between April and December 2020, about people’s experiences after having acute COVID-19.

Participants

3290 respondents, 78% female, 92.1% white ethnicity and median age range 45–54 years; 12.7% had been hospitalised. 494(16.5%) completed the survey between 4 and 8 weeks of the onset of their symptoms, 641(21.4%) between 8 and 12 weeks and 1865 (62.1%) >12 weeks after.

Results

The ongoing symptoms most frequently reported were: breathing problems (92.1%), fatigue (83.3%), muscle weakness or joint stiffness (50.6%), sleep disturbances (46.2%), problems with mental abilities (45.9%), changes in mood, including anxiety and depression (43.1%) and cough (42.3%). Symptoms did not appear to be related to the severity of the acute illness or to the presence of pre-existing medical conditions. Analysis of free-text responses revealed three main themes: (1) experience of living with COVID-19: physical and psychological symptoms that fluctuate unpredictably; (2) interactions with healthcare that were unsatisfactory; (3) implications for the future: their own condition, society and the healthcare system, and the need for research

Conclusion

Consideration of patient perspectives and experiences will assist in the planning of services to address problems persisting in people who remain symptomatic after the acute phase of COVID-19.