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

Abstract

ObjectivesTo 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.DesignWe 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.Participants3290 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.ResultsThe 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 researchConclusionConsideration 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.

Exploring invisibility and epistemic injustice in Long Covid—A citizen science qualitative analysis of patient stories from an online Covid community

“…This study is part of a small but important group of studies that have documented the lived experience of Long Covid in the UK. 2 , 10 , 24 , 25 , 26 , 27 As we are not the first group to publish our results, we have the benefit of being able to place our findings in the context of previous literature to build an overall picture from multiple perspectives. Findings from this, explicitly community‐sourced data, show very similar findings to those from researcher‐led studies, adding to the validity of the body of evidence.…”

Impact of COVID-19 on people with asthma: a mixed methods analysis from a UK wide survey

“…The surveys are distributed via the charity’s (AUK-BLF) mailing lists, websites and social media accounts. Previous studies using data from AUK-BLF surveys helped inform the design of this study 18–21. For this analysis we used data from the survey conducted in October 2020, and focused on people with self-reported COVID-19.…”

“…Previous studies using data from AUK-BLF surveys helped inform the design of this study. [18][19][20][21] For this analysis we used data from the survey conducted in October 2020, and focused on people with self-reported COVID-19.…”

Pilot study of physiotherapist-led versus music therapist-led breathing control exercises for young adults living with breathing pattern disorder: a randomised controlled trial protocol

“…Individuals who return a positive lateral flow test and subsequent PCR test at any stage after consent to the study will be withdrawn from continuing in the study due to the known respiratory complications arising from COVID-19. 47 …”