Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality principles for services
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Abstract
Background
Approximately 10% of patients with Covid-19 experience symptoms beyond 3–4 weeks. Patients call this “long Covid”. We sought to document such patients’ lived experience, including accessing and receiving healthcare and ideas for improving services.
Methods
We held 55 individual interviews and 8 focus groups ( n = 59) with people recruited from UK-based long Covid patient support groups, social media and snowballing. We restricted some focus groups to health professionals since they had already self-organised into online communities. Participants were invited to tell their stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, clinical relationships, access, and service redesign.
Results
Of 114 participants aged 27–73 years, 80 were female. Eighty-four were White British, 13 Asian, 8 White Other, 5 Black, and 4 mixed ethnicity. Thirty-two were doctors and 19 other health professionals. Thirty-one had attended hospital, of whom 8 had been admitted. Analysis revealed a confusing illness with many, varied and often relapsing-remitting symptoms and uncertain prognosis; a heavy sense of loss and stigma; difficulty accessing and navigating services; difficulty being taken seriously and achieving a diagnosis; disjointed and siloed care (including inability to access specialist services); variation in standards (e.g. inconsistent criteria for seeing, investigating and referring patients); variable quality of the therapeutic relationship (some participants felt well supported while others felt “fobbed off”); and possible critical events (e.g. deterioration after being unable to access services). Emotionally significant aspects of participants’ experiences informed ideas for improving services.
Conclusion
Suggested quality principles for a long Covid service include ensuring access to care, reducing burden of illness, taking clinical responsibility and providing continuity of care, multi-disciplinary rehabilitation, evidence-based investigation and management, and further development of the knowledge base and clinical services.
Trial registration
NCT04435041.
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SciScore for 10.1101/2020.10.13.20211854: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: The work received ethical approval from the East Midlands – Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128) on 4th May 2020 and subsequent amendments.
Consent: In accordance with ethics committee recommendations and infection control measures at the time (which discouraged exchange of paper documents), consent was collected either by email or verbally at the beginning of the audio or videotape.Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Four groups were mixed; two were restricted to doctors, two to nurses and allied health professionals, and one to men (with … SciScore for 10.1101/2020.10.13.20211854: (What is this?)
Please note, not all rigor criteria are appropriate for all manuscripts.
Table 1: Rigor
Institutional Review Board Statement IRB: The work received ethical approval from the East Midlands – Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128) on 4th May 2020 and subsequent amendments.
Consent: In accordance with ethics committee recommendations and infection control measures at the time (which discouraged exchange of paper documents), consent was collected either by email or verbally at the beginning of the audio or videotape.Randomization not detected. Blinding not detected. Power Analysis not detected. Sex as a biological variable Four groups were mixed; two were restricted to doctors, two to nurses and allied health professionals, and one to men (with male facilitators). Table 2: Resources
Software and Algorithms Sentences Resources Transcripts and notes were de-identified by removing reference to real names and entered onto NVIVO software version 12. NVIVOsuggested: (NVivo, RRID:SCR_014802)Results from OddPub: We did not detect open data. We also did not detect open code. Researchers are encouraged to share open data when possible (see Nature blog).
Results from LimitationRecognizer: We detected the following sentences addressing limitations in the study:Strengths and limitations of the study: To our knowledge, this is the largest and most in-depth qualitative study of long Covid published in the academic literature to date. The research team included both clinicians and social scientists. Our participants spanned a wide range of ages, ethnic and social backgrounds, and illness experiences – including, importantly, the under-researched majority who were never hospitalised. We oversampled men and people from non-White ethnic groups to partially correct an initially skewed sample. Offering the choice of interviews or focus groups allowed those with sensitive stories to tell to do so in private, and for all participants to select a method with which they were comfortable. The use of multiple linked sociological theories allowed to produce a rich theorisation of the lived experience of the illness and draw on that theorisation to produce principles and practical proposals for improving services. We included experts by experience (people with long Covid) as steering group members, co-interpreters of the data, co-authors on the paper and peer reviewers. The inclusion of a high proportion of healthcare workers both reflects the occupational risk in these groups51,52 and allowed participants to draw on their system knowledge as well as their personal illness experience when suggesting improvements to services. The study does, however, have some limitations. The sample was drawn entirely from the UK, though we hope to go on to produce...
Results from TrialIdentifier: We found the following clinical trial numbers in your paper:
Identifier Status Title NCT04435041 Active, not recruiting Remote-by-Default Care in the COVID-19 Pandemic Results from Barzooka: We did not find any issues relating to the usage of bar graphs.
Results from JetFighter: We did not find any issues relating to colormaps.
Results from rtransparent:- Thank you for including a conflict of interest statement. Authors are encouraged to include this statement when submitting to a journal.
- Thank you for including a funding statement. Authors are encouraged to include this statement when submitting to a journal.
- No protocol registration statement was detected.
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