Dataset Information

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.

SUBMITTER: Buttery S

PROVIDER: S-EPMC8572361 | biostudies-literature | 2021 Nov

REPOSITORIES: biostudies-literature

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Publications

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

Buttery Sara S Philip Keir E J KEJ Williams Parris P Fallas Andrea A West Brigitte B Cumella Andrew A Cheung Cheryl C Walker Samantha S Quint Jennifer K JK Polkey Michael I MI Hopkinson Nicholas S NS

BMJ open respiratory research 20211101 1

<h4>Objectives</h4>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.<h4>Design</h4>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.<h4>Participants</h4>3290 respondents, 78% female ...[more]

PMID: 34732518

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Project description:BackgroundIn the United States, attention has been focused on "open notes" and "open results" since the Office of the National Coordinator for Health Information Technology implemented the 21st Century Cures Act Final Rule on information blocking. Open notes is an established best practice, but open results remains controversial, especially for diseases associated with stigma, morbidity, and mortality. Coronavirus disease 2019 (COVID-19) is associated with all three of these effects and represents an ideal disease for the study of open results for sensitive test results.ObjectivesThis study evaluates patient perspectives related to receiving COVID-19 test results via an online patient portal prior to discussion with a clinician.MethodsWe surveyed adults who underwent COVID-19 testing between March 1, 2020 and October 21, 2020 who agreed to be directly contacted about COVID-19-related research about their perspectives on receiving test results via a patient portal. We evaluated user roles (i.e., patient vs. care partner), demographic information, ease of use, impact of immediate release, notification of results, impact of viewing results on health management, and importance of sharing results with others.ResultsUsers were mostly patients themselves. Users found the portal easy to use but expressed mixed preferences about the means of notification of result availability (e.g., email, text, or phone call). Users found immediate access to results useful for managing their health, employment, and family/childcare. Many users shared their results and encouraged others to get tested. Our cohort consisted mostly of non-Hispanic white, highly educated, English-speaking patients.ConclusionOverall, patients found open results useful for COVID-19 testing and few expressed increased worries from receiving their results via the patient portal. The demographics of our cohort highlight the need for further research in patient portal equity in the age of open results.

Project description:ObjectivesThere is little in-depth qualitative evidence of how symptoms manifest themselves in outpatients with COVID-19 and how these in turn impact outpatients' daily lives. The objective of the study was therefore to explore the experience of outpatients with COVID-19 qualitatively, concerning the symptomatic experience and its subsequent impact on daily life.SettingQualitative research study comprising virtual in-depth, open-ended interviews with outpatients and clinicians.ParticipantsThirty US adult patients with COVID-19 were interviewed within 21 days of diagnosis. Patients were 60% female and 87% white, who had to self-report one of the following: fever, cough, shortness of breath/difficulty breathing, change/loss of taste/smell, vomiting/diarrhoea or body/muscle aches. Five independent clinicians were also interviewed about their experience treating outpatients.Primary and secondary outcome measuresTranscripts were analysed thematically to organise symptoms and impacts of daily life into higher-order overarching categories, and subsequently propose a conceptual model. The adequacy of the sample size was assessed by conceptual saturation analysis.ResultsPatient-reported concepts were organised into six symptom themes (upper respiratory, lower respiratory, systemic, gastrointestinal, smell and taste, and other) and seven impact themes (activities of daily living, broad daily activities, leisure/social activities, and physical, emotional, professional and quarantine-specific impacts). Symptom type, severity, duration and time of onset varied by patient. Clinicians endorsed all patient-reported symptoms.ConclusionsThe manifestation of symptoms in outpatients is heterogeneous and affects all aspects of daily life. Outpatients offered new detailed insights into their symptomatic experiences, including heterogeneous experiences of smell and taste, and the impacts that symptoms had on their daily lives. Findings of this research may be used to supplement existing knowledge of the outpatient experience of mild-to-moderate COVID-19, to further inform treatment guidelines and to provide an evidence base for evaluating potential treatment benefits.

Dataset Information

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

Objectives

Design

Participants

Results

Publications

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

Similar Datasets

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