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

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 (quantitative and qualitative) of responses to a survey accessed through a UK online post-COVID support and information hub between April 2020 and December 2020 about people’s experiences after having acute COVID-19.

Participants

Of 3290 respondents, 78% were female, median age range 45-54 years, 92.1% reported white ethnicity; 12.7% had been hospitalised. 494 respondents (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%) more than 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; (3) Implications for the future – their own condition, society and the healthcare system and the need for research

Conclusion

People living with persistent problems after the acute phase of COVID-19 report multiple and varying symptoms that are not necessarily associated with initial disease severity or the presence of pre-existing health conditions. Many have substantial unmet needs and experience barriers to accessing healthcare. Consideration of patient perspective and experiences will assist in the planning of services to address this.

Ethical approval

Ethical approval was granted by Imperial College Research and Integrity Team (IREC; 20IC6625).

What we already know on this subject

• Many people who develop COVID-19 will go on to endure persistent symptoms past the acute phase of the disease, commonly termed long-COVID.

• Knowledge gaps exist regarding the lived experience and symptom frequency, in people with long-COVID, particularly in those who were not admitted to hospital during the acute phase of their illness.

What this study adds

• The findings from this large population, many of whom were not hospitalised during the acute phase of their illness, demonstrate the varying patterns and persistence of symptoms of long-COVID, which do not appear to be associated with severity of the acute phase of the disease or pre-existing medical conditions.

• Qualitative findings revealing the patient experience of long-COVID symptoms, healthcare, and suggestions for future research and service adaptation.