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 (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.

‘I had no life. I was only existing’. Factors shaping the mental health and wellbeing of people experiencing long Covid: a qualitative study

“…Our findings align with, and extend, existing research into experiences of long Covid. They echo work that has previously described symptoms; impacts on daily life; and interaction with healthcare providers 16 28 29 . However, our work extends previous findings by highlighting which features of long Covid are seen as most significant in shaping mental health and wellbeing from the perspective of people with lived experience.…”

“…In keeping with the growing body of research, our participants reported multiple, varied, relapsing-remitting symptoms often severely impacting their ability to engage in daily life 16 28 29 . These limitations have strong negative impacts on mental health and wellbeing through limiting participation in enjoyable aspects of life and those that gave individuals their sense of identity, including work, leisure, and social activities.…”

“…Other research, particularly from earlier on in the pandemic, also identified various barriers to healthcare 1 16 28 29 , including a lack of specialist service provision, and limited understanding of the illness from healthcare professionals. Our study also shows that some people resorted to accessing private healthcare and felt better supported to manage their symptoms.…”

“…Potentially, with the creation of specialist long Covid services, increasing research, and clinical guidelines, such barriers should become less impactful over time, though given other competing needs faced by healthcare services, access could remain an issue. Feeling ignored or not believed by healthcare professionals, family members and friends, has been commonly reported 1 16 28 29 . These experiences are similar to those described by people with CFS/ME 32 .…”

Multi-organ impairment and Long COVID: a 1-year prospective, longitudinal cohort study

“…We need comparison with similar analyses from other Long COVID studies, and other long-term conditions 25 , with considerable workforce planning implications. There have been heterogenous methods to investigate Long COVID, whether qualitative [26][27][28][29][30] or quantitative 7 , or symptom surveys 31 versus cohort studies 4,32 . Most research still focuses on individual organs [33][34][35][36] .…”