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Persistent symptoms after Covid-19: qualitative study of 114 “long Covid” patients and draft quality criteria for services

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Abstract and Figures

Background Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks. Patients call this “long Covid”. We sought to document the lived experience of such patients, their accounts of accessing and receiving healthcare, and their ideas for improving services. Method 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 personal stories and comment on others’ stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis incorporated sociological theories of illness, healing, peer support, the clinical relationship, access to care, and service redesign. Results The sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian (11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health professionals. 10% had been hospitalised. 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). Emotional touch points in participants’ experiences informed ideas for improving services. Conclusion Quality principles for a long Covid service should 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. Study registration NCT04435041
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Original article submitted to Medrxiv preprint service October 2020
Persistent symptoms after Covid-19: qualitative study of 114
“long Covid” patients and draft quality criteria for services
Emma Ladds,1 academic clinical fellow
Alex Rushforth,1 postdoctoral researcher
Sietse Wieringa,1 postdoctoral clinical researcher
Sharon Taylor,2,3 child psychiatrist, honorary senior lecturer and expert by experience
Clare Rayner,4 occupational physician and expert by experience
Laiba Husain,1 research assistant
Trisha Greenhalgh,1 clinical professor
1 Nuffield Department of Primary Care Health Sciences, University of Oxford
Central and North West London NHS Foundation Trust and Imperial College School of
Medicine, London, United Kingdom
Independent Occupational Physician, Manchester
Corresponding author:
T Greenhalgh trish.greenhalgh@phc.ox.ac.uk
Nuffield Department of Primary Care Health Sciences
University of Oxford, Oxford OX2 6GG
UK
Key words: Post-acute Covid-19, Chronic Covid-19, long Covid, qualitative study, quality
standards
5979 words
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NOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice.
Abstract
Background
Approximately 10% of patients with Covid-19 experience symptoms beyond 3-4 weeks.
Patients call this “long Covid”. We sought to document the lived experience of such patients,
their accounts of accessing and receiving healthcare, and their ideas for improving services.
Method
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 personal stories and comment on others
stories. Data were audiotaped, transcribed, anonymised and coded using NVIVO. Analysis
incorporated sociological theories of illness, healing, peer support, the clinical relationship,
access to care, and service redesign.
Results
The sample was 70% female, aged 27-73 years, and comprised White British (74%), Asian
(11%), White Other (7%), Black (4%), and Mixed (4%). 27 were doctors and 23 other health
professionals. 10% had been hospitalised. 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). Emotional touch points in participants’ experiences
informed ideas for improving services.
Conclusion
Quality principles for a long Covid service should 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.
Study registration
NCT04435041
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Background
“Long” Covid is the name patients gave to Covid-19 infection that has not got better yet.1
Working definitions of ‘post-acute’ (symptoms beyond 3-4 weeks) and ‘chronic’ (symptoms
beyond 12 weeks) Covid-19 are yet to be formally confirmed.2 3 A positive test for Covid-19
is not a prerequisite for diagnosis of post-acute or chronic disease, since many people were
never tested.4
The prevalence and patterning of persistent symptoms after Covid-19 is contested.5
Mainstream medical opinion considers them commoner in people with conditions such as
asthma, diabetes and autoimmune disorders (though they are also known to occur in those
with no pre-existing conditions) and in those who were admitted to hospital.8-10 However,
there has been little or no systematic research on people who were not hospitalised and it is
even conceivable that a protracted illness may be more common in those whose acute illness
was less severe. Whilst academic publications have estimated that 10-20% of people are still
unwell after 3 weeks and 1-3% are still significantly unwell after 12 weeks,3 8 self-surveys of
patients recruited from long Covid peer support groups suggest a much high incidence of
persistent symptoms even taking account of sampling bias (for example, several thousand
people from the UK in such groups report symptoms six months after their acute illness,
which suggests that the figure of 1% cannot be correct).11 12 The high proportion of women in
long Covid support groups4 12 may or may not reflect a true gender difference in incidence.
People with long Covid experience a confusing array of persistent and fluctuating symptoms
including cough, breathlessness, fever, sore throat, chest pain, palpitations, cognitive deficits,
myalgia, neurological symptoms, skin rashes, and diarrhoea; some also have persistent or
intermittent low oxygen saturations.2 4 9-13 The cause of persisting symptoms is unknown, but
probably involves several different disease mechanisms including an inflammatory reaction
with a vasculitic component.14-16 Documented post-acute sequelae include myo- or
pericarditis, heart failure, arrhythmias, and thrombo-embolic complications including
myocardial infarction, stroke and venous thrombosis.17 1 8
Persisting symptoms seem to fall into three broad patterns:4 11 people who were initially
hospitalised with acute respiratory distress syndrome (ARDS) and now have long-term
respiratory symptoms dominated by breathlessness; people who were (usually) not
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hospitalised initially but who now have a multisystem disease with evidence of cardiac,
respiratory, or neurological end-organ damage manifesting in a variety of ways; and people
who have persisting symptoms, often but not always dominated by fatigue, with no evidence
of organ damage. The second two groups have been little studied, and – surprisingly – were
excluded from a recently-established long-term follow-up study of Covid-19 (which is
limited to those who were hospitalised).19
Despite preliminary guidance from multiple sources,2 20-24 there is not yet a consistent
approach to the diagnosis, management and follow-up of patients with long Covid. In the
UK, the National Institute for Health and Clinical Excellence, Scottish Intercollegiate
Guidelines Network, and Royal College of General Practitioners are collaborating on a more
definitive guideline and NHS England has allocated funding for a new Long Covid service.25
To be effective, all these initiatives need to be informed not only by objective research
evidence of the accuracy of tests and efficacy of treatments, but also by research on the
subjective evidence of the patient experience.26
In this study, we sought to answer three key questions. First, how do people with long Covid
(including those who were never hospitalised) experience the development, course and
perhaps resolution of the illness over time? Second, what services have they accessed (or
tried to access), and what was their experience of those services? Third, what are their ideas
for improving the management of their condition and the design and delivery of services?
Methods
Management and governance
The dataset reported here emerged from two research studies: a mixed-method study of how
patients and staff experienced remote care in the Covid-19 pandemic (funded by UK
Research and Innovation Covid-19 Emergency Fund), and a funded extension, designed to
embrace Covid-19, of an ongoing qualitative study of the challenges of living with multiple
health conditions (from the Wellcome Trust). 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. It was overseen by an
independent advisory group with patient representation and a lay chair which met 3-monthly
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via video link. People with lived experience of Covid-19 helped interpret and analyse the data
and gave feedback on drafts of the paper.
Study design and setting
Participants were invited to choose between an individual narrative interview or participation
in an online focus group. The study was conducted in UK between May and September 2020
(towards the end of the first wave of the pandemic).
Sampling and recruitment
We originally sought to interview people who had had telephone or video consultations for
acute Covid-19, as part of a wider study of remote services. We identified those individuals
first via Twitter, and the link was shared on a then nascent Facebook support group
(https://www.facebook.com/groups/longcovid). This brought a large response from
interviewees reporting symptoms many weeks after their acute illness. We decided to
undertake a focused study of such people with the following inclusion criteria: symptoms
developed between February and July 2020 following an acute illness consistent with Covid-
19; symptoms continued beyond 3 weeks. We contacted Covid-19 online patient support
groups (LongCovidSOS, Long Covid Support, Longcovid.org, Patient Safety Learning,
Positive Path of Wellness, Patient Voices) from which we identified a third online group of
UK doctors with long Covid), and also advertised on social media (Twitter) using the
#longcovid hashtag. We used snowballing from our initial sample to identify further
participants who were not in online groups or users of social media. Potential participants
were screened for eligibility and baseline demographic information collected (Table 1). To
correct for an initial gender and ethnic skew, we offered ‘men only’ focus groups and
included additional rounds of invitations for participants from racial groups other than White
British.
Consent
All potential participants were sent brief details of the study and offered a more detailed
standard information sheet. 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.
Participants were assured that all data would be de-identified and stored and handled
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anonymously, and that if they changed their mind about anything they said, they could
contact a named researcher and withdraw that section of the data.
Interviews
Interviewees were invited to tell their story uninterrupted and in their own words, with the
interviewer using conversational prompts (such as “what happened next?” or “how did you
feel when that happened?”) to maintain the narrative.27 Narrative interviews may be
particularly useful for raising sensitive issues and identifying emotional touchpoints in an
illness journey. All but one interviews were conducted by phone or by video using the
business version of Zoom; one (of a participant who was not comfortable using video) was
done by email at their preference. Phone and video interviews were audiotaped with consent
and contemporaneous notes were also made. 11 individuals also submitted symptom diaries.
Focus groups
Focus groups have the added advantage that group members may respond to the stories
related by others, and group dynamics (e.g. humour, conflict) can be used as data, though
lack of privacy may be a concern for some.28 Groups contained between 3 and 12
participants; they lasted 90 minutes (though participants were told they could leave any time
if they were feeling tired). Each group had two trained facilitators including at least one
clinically qualified researcher, plus a research assistant. Four groups were mixed; two were
restricted to doctors, two to nurses and allied health professionals, and one to men (with male
facilitators). One facilitator led the group; the other made contemporaneous notes and also
captured real-time comments in the chat window, inviting comments on these as appropriate.
In each group, all participants were asked to introduce themselves and outline briefly how
Covid-19 had affected them before inviting positive stories about encounters with health
services and then less positive experience.
Data management and analysis
The first 10 individual interviews and all the focus groups were transcribed in full. For
resource and speed reasons, and since many themes raised had already been covered, only
selected portions of the other 45 interviews were transcribed. Transcripts and notes were de-
identified by removing reference to real names and entered onto NVIVO software version 12.
In an initial familiarisation phase, texts were grouped into broad categories (e.g. the illness
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experience, accessing services). An interim synthesis was produced from early transcripts and
progressively refined using the constant comparative method (data from each new transcript
were used to add nuance to the existing synthesis.29 Our analysis was informed by theories of
illness experience,30 self-care,30 peer support,31 32 the clinical relationship,33-35 access to
care,32 36 and service redesign37 (see Discussion).
Patient involvement statement
The study was planned, undertaken, analysed and written in collaboration with people with
long Covid. Two people with long Covid, both clinically qualified, assisted with the data
interpretation and analysis and are listed as co-authors. We gave a webinar presentation via
Zoom to which all 114 patient participants were invited (28 attended), and presented the key
findings including the quotes used in this paper. A recording and copies of the presentation
was shared with all participants and all were invited to correct any errors or
misinterpretations. The draft paper was modified in response to their feedback.
Results
Description of dataset
Demographic and selected occupational details of participants are shown in Table 1. Despite
our efforts to balance for gender and ethnicity, the final sample was skewed to 70% female
and 75% White. By comparison, long Covid support groups are up to 86% female and the
UK population is 80-85% White British (depending on how defined).38 The 55 interviews, 8
focus groups and 11 symptom diaries produced over 1000 pages of transcripts and notes. Our
broad coding produced five over-arching themes which we discuss in more detail below: the
illness experience, accessing care, relationships (or lack of) with clinicians, emotional
touchpoints in encounters with health services, and ideas for improving services.
A serious, uncertain and confusing illness
Participants described symptoms in every part of the body which were sometimes severe or
fluctuating, made worse by the uncertain prognosis and stalled recovery, all of which
combined to make this a frightening, confusing and debilitating illness. Many participants
were unable to make sense of their suffering – an experience intensified by absence of
medical knowledge or guidance. They described being trapped in a cycle of modest
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increments followed by setbacks which were physically and emotionally stressful, with no
clear prospect of full recovery.
I've been absolutely floored and I don’t know... I mean I'm just at the beginning of...
I've got all sorts of... I've got... I see in [Town A] tomorrow, a rheumatologist, to find
out what I've got because I've got vasculitis, which I think is a common thing […].
So, I don’t know how long that'll unfortunately go on for. And I've been left with
nerve issues, like really horrible nerve... stabbing pains in my hands and feet and I
can't move my toes anymore either, so I don’t know what the long term effects; I'm
only at that point of just beginning to discover what the long term effects are, which
are the ones that are kind of you expect to only affect people that were seriously ill in
hospital, not the sort of the everyday people that managed at home with it really, so.
So, I think my... unfortunately, my journey is far from over.
(Individual interview WB1)
Many participants described themselves as previously fit and active, and as having had to
come to terms with a dramatic decline in their ability to perform basic everyday activities.
I'm trapped, in that I can't park that far away and walk [to the shops] like I normally
would because I can't do hills. I can just, in the last couple of weeks, I can do gentle
inclines now, but I sort of grind to a halt on a hill. So, it's very limiting.
(Individual interview TA1)
Participants had discovered the need to establish new routines and explicit self-disciplinary
measures, such as counting steps and planning out visits to the shops, to avoid inevitable
exhaustion if they over-exerted themselves:
I find that it's bizarre how... for instance, yesterday when I went to get my blood tests,
I accidentally ended up getting five thousand steps on my step tracker because of the
doctor's trip and the pharmacy trip and, you know, moving around the house, getting
dressed and stuff. It literally sent me crippled by six pm because it was just too much
for me, compared to the days before where I'd done three thousand steps. So, even
like the small increase like that just literally sends me completely washed out.
(Individual interview EB1)
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Symptoms such as fatigue and cognitive blunting (“brain fog”) severely limited the prospect
of returning to work or finding new employment, as this office worker describes:
I'm not working, I haven't... I wasn’t able to go back to work and then I got made
redundant. I'm... I can't even imagine how I'm going to find a new job yet. In the last
week, I'm wondering because my brain fog seems to have lifted and it's feeling
possible finally, after nearly six months, that I might one day find a new job. But my
life is just nothing like it was and it's not really the life I want, you know; I need to
improve.
(Individual interview TA1)
A few clinicians and non-clinicians in our sample made comparisons with post viral fatigue
states like myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS), expressing
empathy and newfound solidarity with people suffering with these conditions. More
commonly, our respondents felt the fatigue they were experiencing was distinct, and a
consequence of their organ damage.
The level and duration of debility experienced by people in our sample often drew a negative
response from friends, family or employer (as early expert advice suggested that non-
hospitalized patients with mild disease would recover in two weeks39), especially when they
had not had the disease confirmed by a test.
The only reason I wanted the test is, however lovely friends are, it didn’t fit the two-
week image they had of what this illness looks like. They said are you sure this isn’t
anxiety? High pollen? It [wanting a positive test result] is more for validation.
(Individual interview JH1)
Doctors and other clinicians in our sample described how their symptoms and the
accompanying prognostic uncertainty, in addition to having all the effects listed above, had
also stripped them of confidence in their professional abilities. They were especially afraid
of the impact of cognitive deficits that might make them unsafe as clinicians. Some were
keen to quantify their deficits by formal cognitive testing.
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[T]he medicolegal aspect is huge and I think possibly certainly feels that way as a GP
and it’s scary to not be able to recognise potentially where you have deficits because
if you can’t recognise them then that’s an unknown unknown in what can you do with
that. And just the sort of fast-paced nature of GP and as [another participant]
mentioned earlier you’ve got all these things having to kind of keep windows open at
once. […] It seems terrifying to think how we’re going to get back to it
(Participant from Doctors FG1)
In some cases, these professional concerns were compounded by the perception that clinical
colleagues disbelieved or dismissed their symptoms as “just anxiety”.
Difficulty accessing and navigating services
Participants found accessing care complex, difficult and exhausting. Many had contacted the
national telephone advice service, NHS111, as directed by public messaging, and reported
what they felt were delayed, absent or inappropriate responses due to pressure on the service
itself, a perception among providers that their symptoms were less serious than they actually
were, or lack of clearly defined care pathways for patients with long-term persisting
symptoms.
One day I had blue finger nails and I wasn’t cold and my husband was working at
home at the time and I said to him and he looked, I mean I’d real proper cyanosis on
all my finger nails and I phoned the GP and the GP answer phone said if you’ve got
any of the signs of, of Covid please ring 111 and so I rang 111 and, I live in [city with
high incidence of Covid-19] I don’t know if that makes any difference but I was put
on hold and after over an hour, an hour and twenty minutes nobody answered so I just
put the phone down because I was listening to music and a looped tape of what the
symptoms were and I was getting, going crazy
(Participant from Allied Health Professionals FG2)
Remote by default primary care services accessed through ‘total triage’ (which required
every patient to complete an online consultation form or have a triage phone call) had been
introduced as part of infection control policy in England and Wales in the acute phase of the
pandemic.40 This system had generated additional queues and obstacles to getting seen by a
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general practitioner, which were particularly burdensome for participants whose disease was
draining their energy or who did not own mobile phones.
I’ve been able to get a lot of, book a lot of services online on the internet, they’ve now
switched to Dr iQ which is only for mobile phones at the moment, I can’t afford my
mobile phone, I have to phone in my deepest coma sleep at 8:00 am to talk to any GP
now.
(Participant in Patient FG1)
Some participants who had been discharged from hospital or contacted the national helpline
NHS111 had been directed towards their general practitioner for managing long Covid
symptoms (since the NHS111 route had been designed for acute Covid-19), but then directed
back to NHS111. There was perceived to be a missing tier of support between patients self-
managing their own symptoms and presenting acutely to hospital or being seen in a specialist
clinic.
The focus when you do get a new GP speaking to you seems to be that they go back
to the beginning and I’ve had a few consultations where I know I don’t need to go to
hospital but you’re assessment is really all around ‘do I stay at home and wait this out
or do I go to hospital?’ and there’s nothing in between that. And I think if there was
the same GP who we are able to consult regularly they would build a picture of your
baseline and I think that’s what’s lost with digital ways of working.
(Participant in Doctors FG2)
Some though not all general practitioners were reported to be unaware of rehabilitation
services locally. Clinicians in our sample described finding out about rehabilitation clinics
themselves and then asking for a referral. Few participants had been referred to a specialist
and some who had received a specialist assessment described the experience as fragmented
(they felt that “one bit of me” had been assessed by organ-specific tests and imaging, but
there had no overall assessment of how long Covid had affected them generally and how they
were functioning on a day to day basis). More often, they found local hospital outpatient
services effectively closed for business, leaving them with no clear options.
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I've had to do a lot of this myself, to be honest. It was in the early on stages, I actually
rang around the hospitals to see if there was anything, so, but there wasn't anything. I
just rang the switch board and said, ‘What’s the deal with people who’ve had Covid?’
But they said nothing. Gosh, yeah, I was desperate. I'm sorry, I'm one of these people
who want answers and I wasn't getting any answers
(Individual interview RH)
As the above quote illustrates, many participants did much work to self-advocate by
emailing, telephoning or otherwise cajoling providers to make referrals or circumvent
bottlenecks. These efforts occasionally included attempts – perhaps out of desperation – to
‘play’ an algorithm-driven system by omitting information (for example, deliberately
conveying the impression to a receptionist or call handler that they had not had Covid-19).
Others called on contacts or friends of friends to secure ‘back door’ appointments. Clinicians
who used such tactics expressed guilt but also anger that most fellow sufferers lacked the
kind of system knowledge that would allow them to do the same. Some non-clinicians,
however, showed remarkable resourcefulness in this regard. The participant below describes
her efforts to work around an NHS111 online form in order to be seen by her GP for a blood
test:
I did the e-consult – I had to do it a couple of times – I kind of learned to answer the
questions to get it to send a message to my GP surgery… If you say you’ve got heart
palpitations or breathlessness it’s telling you to call 111 which I didn’t want to do.
And so I had to downplay symptoms [laughs] to get through. I cancelled it and did it
again.
(Patient AN1)
Another tactic employed, especially by clinicians who suspected they had end-organ damage,
was to seek a private consultation. We heard several accounts of privately-ordered specialised
tests (such as cardiac magnetic resonance imaging) which confirmed such damage; positive
test results helped to validate their illness and (sometimes) gained them a specialist NHS
referral.
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Concerns about quality and safety of care
Some of our participants described strong therapeutic relationships with particular clinicians,
who listened to their stories, believed them, validated their suffering, acknowledged
uncertainties, arranged appropriate tests and follow-up, and offered continuity of care.
I was amazed at my experience because she was kind, empathetic she was
compassionate [um] on the phone and she was listening to everything I was saying no
matter how random or crazy the symptoms sounded but not only that she, I think for
the first five days after I called her she had a daily check in call with me to monitor
how I’m doing so it was like a ten minute phone call every day for the first five days
(Participant in Patients FG1)
Unfortunately, such experiences were greatly outweighed in our dataset by the many who
expressed concern that their clinician did not recognise their condition, did not believe that it
existed, did not know how to diagnose it, did not empathise or acknowledge their suffering,
did not know how to manage it (including ignorance of local rehabilitation services and
referral pathways described above), and refused to test or refer. Some participants felt a
responsibility, on behalf of fellow sufferers, to persuade clinicians that their symptoms were
real, undertake their own research (individually or collectively) on this novel disease, and
construct their own care pathway in the absence of an established local one. The following is
from a patient who was getting troubling palpitations which they were aware could have a
cardiac cause.
They said ok we’ll get someone to phone you. My GP called back and just said ‘oh
well it’s probably anxiety’. He didn’t seem to have any idea what it could be. I felt
fobbed off. I said I’m worried – there are articles and news outlets that I’ve been
reading and I want to know what’s happening to me – people are having strokes,
blood clots. I haven’t been to hospital but I’m concerned I’m still getting these
effects. He said ‘oh you’ll be fine you’ve only had it mildly’.
(Individual interview ED1)
Whilst many participants liked the convenience of remote consulting (usually by telephone),
others expressed concern about a lack of face-to-face examination, particularly for worrying
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symptoms. In some but by no means all cases, a request for a consultation was picked up by
whoever was on duty, leading to loss of continuity of care – which mattered because the
person’s story was often long, unusual and complex. Others described negative impacts on
their clinical management (one patient with diabetes, for example, developed pain and
tingling in the hands and feet and reduced ability to walk, and was surprised not to have been
invited in to be examined).
Several participants related what may have been significant events which raised safety
concerns. Some of these seemed to have been compounded by remote assessments and over-
adherence to protocols.
About five weeks in I think it was for me I was still desperately short of breath a little
bit better than right at the start but it was still coming back in massive waves and I
remembered ringing my GP from the floor on my lounge laying on my front and kind
of saying I’m really short of breath, you know, do you think I should try an inhaler do
I need to go back to A&E and I was kind of told well you don’t really sound too out
of breath over the phone and I got given diazepam and I was just kind of just
heartbroken at that point I was just absolutely like right I’m, I’ll take it so that I can
tell you tomorrow maybe that that hasn’t helped or whatever but I just, I really felt at
that point right if you could see me you would see that I am really like broken
(Participant in Doctors FG2)
One interviewee described making a total of 16 phone calls to obtain a repeat prescription for
an asthma inhaler. They had told a triage administrator that the long Covid had exacerbated
their asthma, been told to contact NHS111 because this was what the protocol demanded for
Covid-19 symptoms, but then been told by the NHS111 doctor to request the repeat
prescription from their own doctor. The duty doctor eventually phoned them and told them
they did not sound breathless enough to be given an inhaler. Further phone calls were needed
to track down the regular general practitioner and secure the inhaler.
Given the many and evident gaps in services, many participants – both men and women –
found that online peer support groups offered the greatest source of support through shared
experiences, knowledge and validation. These groups contained considerable experiential
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expertise, and many participants heard about them from professionals who recognised the
limitations of their own knowledge and understanding.
At least I know I'm not alone. And I think people who actually have had the disease
tend to know a little bit more about it. So, you know, sixth sense, I actually think that
the support group has given more knowledge than the doctors have.
(Patient EB1)
Discovery of such groups were described as “epiphany” moments and as “salvation” by
participants, giving them hope that they might begin to move on from the chaos of long
Covid illness and onto a story of restitution.41
Emotional touch points
The experiences described above were associated with what Bate and Robert have called
emotional touch points:42 powerful feelings such as anger, frustration, fear and hopelessness.
Our participants described feeling physically and emotionally exhausted from the burden of
trying to access services, be believed, navigate incomplete and inadequate care pathways,
gain knowledge, organise their own recovery plan, and integrate their own care across a
disjointed and siloed service. Some talked of a profound breakdown of trust in a previously
valued family doctor service.
When asked what changes would be needed in services to avoid or repair these emotional
touch points, participants made many suggestions, from which we distilled some preliminary
quality principles for a long Covid service (see Box 1).
BOX 1
Discussion
Summary of key findings
This qualitative study of 114 people with long Covid in UK, including high representation
from health professionals, has revealed a number of important findings. People experience
long Covid as a confusing illness with many, varied and often relapsing-remitting symptoms,
uncertain prognosis and a heavy sense of loss and stigma. They find it difficult to access and
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navigate services which they experience as fragmented and siloed; some described not being
taken seriously. There appears to be wide variation in clinical practice (e.g. inconsistent
criteria for seeing, investigating and referring patients), and in the quality of the therapeutic
relationship. We identified a number of possible critical events which may have been partly
due to overstretched, disjointed services designed to discourage face-to-face encounters.
These findings informed draft quality principles, summarised in Box 1.
Comparison with theoretical literature
Unlike disease, which can be defined in terms of a typical constellation of symptoms, signs
and test results, illness is a personal, lived experience that is both emotionally laden and
socially meaningful.30 Participants’ experiences of Covid-19 and its sequelae fitted Frank’s
depiction of the “chaos narrative”, in which an illness experience is uncertain, confusing and
with no clear direction or purpose.41 Many of the narratives conveyed a sense of shame and
blame consistent with stigma.43 Our findings illustrate that serious illness does not merely
disrupt people’s activities and routines; it can threaten their very identity as healthy,
independent and successful selves.44 45 “Spoiled identity” seemed a particular concern in our
sample, especially since symptoms were largely non-specific and not biomedically validated.
The heavy burden of treatment described by our participants, where the patient is expected to
self-manage some or all aspects of their care, accords with contemporary theories of illness
burden.46 Accounts of positive care experiences are explained by theories of good
professional practice.35 The good clinician engages reflexively with the patient’s lived
experience and acts not merely as diagnostician or technical expert but also as active listener
and professional witness.33 34 Continuity of the clinical relationship is particularly important
in chronic illness.34 These qualities are enshrined within the professional standards outlined in
the General Medical Council’s ‘Duties of a Doctor’.47
Our data are consistent with previous theorisations of access to healthcare in relation to
objectively defined dimensions of the service (e.g. approachability, acceptability, availability,
affordability, appropriateness48). Patients’ struggles to be seen as legitimate and gain access
to services also resonate with the sociological notion of candidacy – that is, how the patient’s
eligibility for care is negotiated between them and their healthcare providers (a construct
which is structurally, culturally, organisationally and professionally shaped).49 50
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Making sense of, and managing, chronic illness may become easier in peer support
communities (often though not always online), where new members learn practical
approaches from more experienced ones and that was certainly the case amongst our cohort,
who frequently felt this was their only option.32 36
The identification of emotional touch-points in our participants’ narratives draws on
experience-based [co-]design (EBCD), an approach developed to ensure that health services
are designed around the patient experience.37 Key features include a grounding in the
perceptions and reactions of individual patients, pragmatic application in front-line health
services, and the use of collective sensemaking to produce new understandings.37
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 cross-national comparisons by collaborating with
researchers in other countries. We did not fully correct for skews in the sample, and in
particular the perspectives of some minority ethnic groups have not been fully captured. It is
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likely that despite our efforts to do democratic collaborative research with patients, we may
not have fully grasped the lived experience or represented all voices.
Comparison with previous empirical studies
Perhaps the most important contribution our findings make to previously published data is to
affirm the experience of patients with long Covid previously published in auto-
ethnographies,53 patient-led surveys,4 narrative reviews,54 commentaries,1 55 and the views of
‘doctors as patients’.56 Our findings also resonate to a large extent with surveys on patients
discharged from hospital.7 9 57 These sources, like our own dataset, emphasise the varied
manifestations, uncertain course and sometimes protracted recovery from this disorienting
and new illness; the stigma of not being believed; the frustration of scientific and medical
uncertainty and ignorance; and problems accessing health services. We have captured the
voices of patients who were excluded from other formal research studies because they were
not admitted to hospital. We have taken forward suggestions for new services and
improvements in healthcare, based on the emotional touch points of the patient experience.
Implications for services
A wholescale redesign of clinical services for long Covid is beyond the scope of this paper.
Moreover, the details of such services will be determined by local and contextual factors.
However, based on our data, we believe that the quality principles listed in Box 1 should
inform and underpin both generalist and specialist services for long Covid.
Many of these principles accord strongly with a recently published manifesto written by a
group of doctors with long Covid which calls for: greater emphasis on research and
surveillance; appropriate development of, and access to, clinical services; and significant
patient involvement in both research and service development.56
Whilst policymakers in UK have recently announced a new service for Covid-19
rehabilitation in specialist clinics, 25 primary care services are not mentioned. Based on our
findings, general practitioners and other primary care clinicians appear to need better
knowledge, better guidance, and more time and resources to deliver the generalist care and
support which many patients with long Covid need, though this would have resource
implications.
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Conclusion
This study has illustrated the uniquely varied, burdensome and uncertain nature of the lived
experience of long Covid and provided some preliminary principles for developing services
to address their needs (Box 1).
Perhaps the most important contribution of this study is to have identified a mismatch
between what the peer-reviewed scientific literature is saying about persistent symptoms and
what patients are actually experiencing. Our findings suggest that the various online patient
support groups for long Covid have earnt a place at the table when designing services and
planning new research. Whilst such groups are not new,31 and may sometimes grow to a
membership of thousands and provide a source of patient-generated data for researchers,58 the
long Covid peer support groups on Facebook and Slack have taken the lead in generating the
evidence base on long Covid, sharing practical advice, filling gaps in the formal support
system, and campaigning for better and more consistent services.
While health social movements studied by sociologists have traditionally been founded and
driven by non-clinically trained patients,36 long Covid is perhaps novel in including relatively
large numbers of clinicians and scientists among its ranks (many of whom contracted the
virus in the course of their work and now have multisystem complications). The combination
of clinical and experiential knowledge offered by such communities is an important resource
for both service planning and research.56 It is time to collaborate with these groups to take
forward a genuinely patient-centred research agenda.
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Acknowledgements: We thank the 114 participants for their interest and contributions, and
xx peer reviewers for helpful comments on a previous draft of this paper.
Contributors and sources: EL, AR and TG conceptualised and designed the study. EL, AR,
SW and TG conducted interviews and focus groups. EL and AR led data analysis, with input
from SW and TG, and produced a first draft of the results section. TG wrote the first draft of
the paper which was refined by all authors. LH provided research assistant support and
conducted some interviews. ST and CR provided expertise by experience and knowledge of
patient-led research. TG presented findings to long Covid patient participants with
assistance from EL, AR, SW and LH. All authors contributed to refinement of the paper
provided additional references. TG is corresponding author and guarantor. TG affirms that
the manuscript is an honest, accurate, and transparent account of the study being reported;
that no important aspects of the study have been omitted; and that any discrepancies from the
study as planned (and, if relevant, registered) have been explained.
Competing interests: TG is currently sitting on the oversight group for the long Covid
guideline at the National Institute for Health and Clinical Excellence. TG and EL provided
evidence to the House of Lords Select Committee on long Covid. CR and ST are members of
a long Covid patient support group. Other authors have no relevant interests to declare.
Copyright: The Corresponding Author has the right to grant on behalf of all authors and
does grant on behalf of all authors, a worldwide licence to the Publishers and its licensees in
perpetuity, in all forms, formats and media (whether known now or created in the future), to
i) publish, reproduce, distribute, display and store the Contribution, ii) translate the
Contribution into other languages, create adaptations, reprints, include within collections
and create summaries, extracts and/or, abstracts of the Contribution, iii) create any other
derivative work(s) based on the Contribution, iv) to exploit all subsidiary rights in the
Contribution, v) the inclusion of electronic links from the Contribution to third party material
where-ever it may be located; and, vi) licence any third party to do any or all of the above.
. CC-BY-NC-ND 4.0 International licenseIt is made available under a
is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted October 14, 2020. ; https://doi.org/10.1101/2020.10.13.20211854doi: medRxiv preprint
Funding: This research is funded from the following sources: National Institute for Health
Research (BRC-1215-20008), ESRC (ES/V010069/1), and Wellcome Trust (WT104830MA).
Funders had no say in the planning, execution or writing up of the paper.
Table 1: Participant characteristics
Individual interviews
Focus group participants
Total
Total participants
55
59
114
Gender
Female
Male
Other
TOTAL
40
15
0
55
40
19
59
80
34
114
Age
Median
Range
48
31-68
43
27-73
46
27-73
Ethnicity
White British
White other
Black
Asian
Mixed
39
4
3
7
2
45
4
2
6
2
84
8
5
13
4
Health professionals
Doctor
Nurse
Paramedic
Clinical psychologist
Pharmacist
Dental hygienist
TOTAL
8
6
1
1
1
1
1
19
12
27
18
1
1
1
1
1
Recruited from
Online patient group
Social media
Other
31
17
7
48
11
Hospitalised with acute Covid
-
19
Yes
No
5
50
6
53
[note to editor and reviewers: we are re-checking some of the figures in the above table – we know we had at
least one physio for example – minor corrections will be made before final submission]
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. CC-BY-NC-ND 4.0 International licenseIt is made available under a
is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. (which was not certified by peer review) The copyright holder for this preprint this version posted October 14, 2020. ; https://doi.org/10.1101/2020.10.13.20211854doi: medRxiv preprint
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... It has been estimated that approximately 5-10% of the people experience prolonged symptoms after COVID-19 [3,6,14]. A growing number of these patients have gathered on online forums and social media, as they mostly feel unheard, perceive insufficient support from clinicians, and lack clearly defined healthcare pathways, especially when they were not admitted to the hospital [1,15,16]. These so-called long COVID-19 peer support groups serve as source of support through shared experiences, knowledge and expertise, have taken the lead in generating evidence on COVID-19 with persisting symptoms and campaigning for better and more consistent healthcare [15,16]. ...
... A growing number of these patients have gathered on online forums and social media, as they mostly feel unheard, perceive insufficient support from clinicians, and lack clearly defined healthcare pathways, especially when they were not admitted to the hospital [1,15,16]. These so-called long COVID-19 peer support groups serve as source of support through shared experiences, knowledge and expertise, have taken the lead in generating evidence on COVID-19 with persisting symptoms and campaigning for better and more consistent healthcare [15,16]. ...
... They did not have a formal COVID-19 testing at the time of the suspected infection. 15 (11)(12)(13)(14)(15)(16)(17)(18) 6 (4-9)* 6 (3-8)*# Work Productivity and Activity Index Percentage of work time missed due to ill health (absenteeism) (mean (SD)) T1 T2 Percentage of impairment while working (presenteeism) (mean (SD)) T1 T2 Overall work impairment due to health (work productivity), % (mean (SD)) T1 T2 Activity impairment, % (mean (SD)) T1 T2 ...
Article
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Background It remains unknown whether and to what extent members of online long COVID-19 peer support groups remain symptomatic and limited over time. Therefore, we aimed to evaluate symptoms in members of online long COVID-19 peer support groups up to 6 months after the onset of COVID-19-related symptoms. Methods Demographics, symptoms, health status, work productivity, functional status and health-related quality of life were assessed about 3 and 6 months after the onset of COVID-19-related symptoms in members of online long COVID-19 peer support groups. Results Data of 239 patients with a confirmed COVID-19 diagnosis (83% women; median (IQR) age: 50 (39–56) years) were analysed. During the infection, a median (IQR) of 15 (11–18) symptoms was reported, which was significantly lower 3 and 6 months later: 6 (4–9) and 6 (3–8), respectively (p<0.05). From 3 to 6 months follow-up, the proportion of patients without symptoms increased from 1.3% to only 5.4% (p<0.001). Patients also reported a significantly improved work productivity (work absenteeism and presenteeism: 73% versus 52% and 66% versus 60%), self-reported good health (9.2% versus 16.7%), functional status (Post COVID-19 Functional Status scale: 2.4 (0.9) versus 2.2 (0.8)) and health-related quality of life (all p<0.05). Conclusion Although patients with confirmed COVID-19, who were all members of online long COVID-19 peer support groups, reported significant improvements in work productivity, functional status and quality of life between 3 and 6 months follow up, these data clearly highlight the long-term impact of COVID-19, as approximately 6 months after the onset of COVID-19-related symptoms a large proportion still experienced persistent symptoms, a moderate-to-poor health, moderate to severe functional limitations, considerable loss in work productivity, and/or an impaired quality of life. Action is needed to improve the management and healthcare of these patients.
... It has been estimated that approximately 5-10% of the people experience prolonged symptoms after COVID-19 [3,6,14]. A growing number of these patients have gathered on online forums and social media, as they mostly feel unheard, perceive insufficient support from clinicians, and lack clearly defined healthcare pathways, especially when they were not admitted to the hospital [1,15,16]. These so-called long COVID peer support groups serve as source of support through shared experiences, knowledge and expertise, have taken the lead in generating evidence on COVID-19 with persisting symptoms and campaigning for better and more consistent healthcare [15,16]. ...
... A growing number of these patients have gathered on online forums and social media, as they mostly feel unheard, perceive insufficient support from clinicians, and lack clearly defined healthcare pathways, especially when they were not admitted to the hospital [1,15,16]. These so-called long COVID peer support groups serve as source of support through shared experiences, knowledge and expertise, have taken the lead in generating evidence on COVID-19 with persisting symptoms and campaigning for better and more consistent healthcare [15,16]. ...
... During the COVID-related infection a median of 15 (11)(12)(13)(14)(15)(16)(17)(18) symptoms were reported, which was significantly lower about 3 and 6 months later: 6 (4-9) and 6 (3-8), respectively (p<0.001) (table 1, figure 1). At all three time-points, fatigue was the most prevalent symptom (figure 2). ...
... HCWs are at higher risk of contracting COVID-19 2 compared with population norms, and like others who contract COVID-19, they also report living with longer term consequences of COVID-19 such as Long COVID. 3 Coupled with this, and prior to the pandemic, HCWs had higher risks of experiencing high levels of emotional exhaustion syndromes such as 'burnout'. 4 Fatigue is the common symptom experienced with from both medical and occupational causes. ...
... 10 Long COVID fatigue can draw parallels to reported literature describing myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) with those living with the condition commonly describing persistent and disabling exhaustion, exercise intolerance, cognitive difficulty and musculoskeletal/ joint pain. 3 Long COVID fatigue has longer term implications for individuals and society. One study, with a sample size of 128 participants, conducted in the initial phases of the pandemic reported over half (52%) of participants experiencing persistent levels of fatigue 10 weeks after catching the virus. ...
Article
Coronavirus disease (COVID-19) presents many challenges to healthcare systems internationally, none more so than the significant reporting among healthcare workers (HCWs) of occupational fatigue and burnout, or LongCOVID related symptoms. Consensus on the extent of HCW fatigue during the pandemic remains largely unknown, as levels of Long-COVID related fatigue in HCWs appears to be on the rise. What is known, is that amongst current levels, impacts of fatigue on HCW wellbeing and performance is likely. Developing strategies to mitigate fatigue are the responsibilities of all healthcare system stakeholders. Leadership which goes beyond organisational efforts of mitigating fatigue through mandated working hour limits alone are needed. A process to facilitate identification, mitigation and prevention of fatigue is likely to be best suited in this regard. This might involve development of operational systems modelled off successful industries, such as aviation, for performance optimisation. These system-based designs provide the foundation for systematic yet innovative approaches to enable effective design of macro-to-micro level interventions for fatigue mitigation. Shifts in organisational culture have occurred in healthcare since the onset of the pandemic, with increasing agility and embracing of innovation. Creating a culture whereby we recognise and support people in being malleable through a pandemic and beyond is at the level of leadership. Leveraging this cultural shift allows an opportunity for organisational change. One focus of such a leverage within systems could be the incorporation of the evidence-based practical recommendations informed by the authors of this paper.
... Also, Sudre et al. analyzing 4,182 incident cases of non-severe COVID-19 who logged their symptoms prospectively in the COVID-19 Symptom Study App showed that women aged 50-60 were at greatest risk of developing "long-COVID" (148). Patients described symptoms in every part of the body which were sometimes severe or fluctuating (149,150). Paul Garner, a professor at Liverpool School of Tropical Medicine and Co-ordinating Editor of the Cochrane Infectious Diseases Group, wrote on the 95th day after symptoms onset in the British Medical Journal Opinion (151). He said "I am unable to be out of bed for more than three hours at a stretch. . . ...
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Whilst the entire world is battling the second wave of COVID-19, a substantial proportion of patients who have suffered from the condition in the past months are reporting symptoms that last for months after recovery, i. e., long-term COVID-19 symptoms. We aimed to assess the current evidence on the long-term symptoms in COVID-19 patients. We did a systematic review on PubMed, Web of Science, EMBASE, and Google Scholar from database inception to February 15, 2021, for studies on long-term COVID-19 symptoms. We included all type of papers that reported at least one long-term COVID-19 symptom. We screened studies using a standardized data collection form and pooled data from published studies. Cohort cross-sectional, case-report, cases-series, case-control studies, and review were graded using specific quality assessment tools. Of 11,361 publications found following our initial search we assessed 218 full-text articles, of which 145 met all selection criteria. We found that 20.70% of reports on long-term COVID-19 symptoms were on abnormal lung functions, 24.13% on neurologic complaints and olfactory dysfunctions, and 55.17% on specific widespread symptoms, mainly chronic fatigue, and pain. Despite the relatively high heterogeneity of the reviewed studies, our findings highlighted that a noteworthy proportion of patients who have suffered from SARS-CoV-2 infection present a “post-COVID syndrome.” The multifaceted understanding of all aspects of the COVID-19 pandemic, including these long-term symptoms, will allow us to respond to all the global health challenges, thus paving the way to a stronger public health.
... Their inevitable response was to try to accelerate recovery through exercise to fight fatigue, prevent long-term disabilities, and return to their previous level of activity. 8 Physical therapists and exercise clinicians worldwide are promoting their rehabilitation skills to people living with long COVID. However, our enthusiasm may have been shortsighted and a disservice to patients' safety. ...
Article
Synopsis: The term long COVID was coined by patients to describe the long-term consequences of COVID-19. One year into the pandemic, it was clear that all patients-those hospitalized with COVID-19 and those who lived with the disease in the community-were at risk of developing debilitating sequelae that would impact their quality of life. Patients with long COVID asked for rehabilitation. Many of them, including previously healthy and fit clinicians, tried to fight postviral fatigue with exercise-based rehabilitation. We observed a growing number of patients with long COVID who experienced adverse effects from exercise therapy and symptoms strikingly similar to those of myalgic encephalomyelitis (ME). Community-based physical therapists, including those in private practice, unaware of safety issues, are preparing to help an influx of patients with long COVID. In this editorial, we expose growing concerns about long COVID and ME. We issue safety recommendations for rehabilitation and share resources to improve care for those with postviral illnesses. J Orthop Sports Phys Ther 2021;51(5):197-200. doi:10.2519/jospt.2021.0106.
... A harm reduction approach in this case would prioritize aiding the patient instead of assuming that the patient seeks to avoid work without reason, or that the patient is "guilty" of having COVID-19 in the first place due to their behavior or not seeking laboratory diagnosis early in the illness. Clinicians can help patients navigate the pandemic by making a clinical diagnosis of Long COVID, recognizing debilitating conditions, providing treatment and advice, locating resources available in the community, and advocating for measures to enable all those with COVID to live full lives in the context of their illness while preserving others' safety 23,24 . ...
Article
In Long Covid, symptoms do not resolve within several weeks after acute infection with SARS-CoV-2. Patients with COVID-19 and long COVID face stigma and discrimination. One important type of discrimination is epistemic injustice which includes testimonial and hermeneutical injustices. Testimonial injustices occur when healthcare professional disregard or discount patients’ symptoms. This worsens healthcare outcomes and exacerbates challenges to adequate healthcare access at the individual level. Furthermore, testimonial injustices may lead to hermeneutical injustices – systemic underrepresentation of the experiences of the marginalized and minoritized. Healthcare professionals play an essential role in mitigating injustices and have a duty to reduce harms done to patients with long COVID. It is crucial that the clinician avoid multiplying associated harms by not engaging in epistemic injustices. We suggest the disability model as an approach to improve clinicians’ response to long covid. Epistemic injustice leads to systemic inequities that affect those with chronic disease in general, particularly in populations suffering from structural inequities. The COVID-19 pandemic provides an opportunity for solidarity with those suffering from other chronic diseases that have been marginalized and stigmatized.
Article
Introduction: COVID 19 infection has caused a pandemic across the globe for continuous 2-3 years as it started its journey in Huan city of china in 2019, hence it got its name as COVID 19. Aims and Objectives: To assess the fungal infections (mucormycosis, Apergillus and candida ) in post covid patients. Total 59 cases of COVID Methodology: 19 infections with fungal infection were included. Out of 59 cases, 46 cases showed mucormycosis, 7 sh Results: owed aspergillus and 6 cases showed mixed infection (> one species of fungal organism). Discussion: Most commonly the fungal infection occurs in the paranasal sinuses. Usually such patient's presents with severe headache, blurring of vision and overlying skin discoloration. The best non invasive modality for diagnosis is the CT scan of paranasal sinus. It shows diffuse thickening of sinus mucosa with irregular surface and bone erosion particularly orbital bones. It leads to invasion into the orbital cavity as well as with cranial cavity which has 100% mortality. Fungal infections Conclusion: in COVID 19 patients are dreadful and it causes high mortality. Most common fungal infection is Mucormycosis followed by Apsergillus and Candida.
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This paper discusses the economic features of the current Covid-19 outbreak and its relation to labour markets and new skills in demand. At the same time, it focuses on how it started to expand worldwide, while reporting the ways of transmission and their effects on daily social and professional life. It is argued that focusing on skills and human capital could offer a strong foundation for building sustainable economies, as the recent months have been a suitable period to progress and advance digital skills, thus reducing digital illiteracy, while at the same time developing certain major sectors such as online education, ecommerce, telemedicine, entertainment, digital collaboration tools, virtual reality applications, etc. The author mainly focuses on the analysis of the recent global trends in many affected sectors, examines possible unemployment issues with an emphasis on the kind of new skills and soft skills in demand that are necessary for an easier transition to the new Covid-19 way of life.
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Long-term infection of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) represents a challenge to virus dispersion and the control of coronavirus disease 2019 (COVID-19) pandemic. The reason why some people have prolonged infection and how the virus persists for so long are still not fully understood. Recent studies suggested that the accumulation of intra-host single nucleotide variants (iSNVs) over the course of the infection might play an important role in persistence as well as emergence of mutations of concern. For this reason, we aimed to investigate the intra-host evolution of SARS-CoV-2 during prolonged infection. Thirty-three patients who remained reverse transcription polymerase chain reaction (RT-PCR) positive in the nasopharynx for on average 18 days from the symptoms onset were included in this study. Whole-genome sequences were obtained for each patient at two different time points. Phylogenetic, populational, and computational analyses of viral sequences were consistent with prolonged infection without evidence of coinfection in our cohort. We observed an elevated within-host genomic diversity at the second time point samples positively correlated with cycle threshold (Ct) values (lower viral load). Direct transmission was also confirmed in a small cluster of 2 Virus Evolution healthcare professionals that shared the same workplace by the presence of common iSNVs. A differential accumulation of missense variants between the time points was detected targeting crucial structural and non-structural proteins such as Spike and helicase. Interestingly, longitudinal acquisition of iSNVs in Spike protein coincided in many cases with SARS-CoV-2 reactive and predicted T cell epitopes. We observed a distinguishing pattern of mutations over the course of the infection mainly driven by increasing A→U and decreasing G→A signatures. G→A mutations may be associated with RNA-editing enzyme activities; therefore, the mutational profiles observed in our analysis were suggestive of innate immune mechanisms of the host cell defense. Therefore, we unveiled a dynamic and complex landscape of host and pathogen interaction during prolonged infection of SARS-CoV-2, suggesting that the host's innate immunity shapes the increase of intra-host diversity. Our findings may also shed light on possible mechanisms underlying the emergence and spread of new variants resistant to the host immune response as recently observed in COVID-19 pandemic.
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Coronavirus disease 2019 (COVID-19) is a viral infection which can cause a variety of respiratory, gastrointestinal, and vascular symptoms. The acute illness phase generally lasts no more than 2–3 weeks. However, there is increasing evidence that a proportion of COVID-19 patients experience a prolonged convalescence and continue to have symptoms lasting several months after the initial infection. A variety of chronic symptoms have been reported including fatigue, dyspnea, myalgia, exercise intolerance, sleep disturbances, difficulty concentrating, anxiety, fever, headache, malaise, and vertigo. These symptoms are similar to those seen in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a chronic multi-system illness characterized by profound fatigue, sleep disturbances, neurocognitive changes, orthostatic intolerance, and post-exertional malaise. ME/CFS symptoms are exacerbated by exercise or stress and occur in the absence of any significant clinical or laboratory findings. The pathology of ME/CFS is not known: it is thought to be multifactorial, resulting from the dysregulation of multiple systems in response to a particular trigger. Although not exclusively considered a post-infectious entity, ME/CFS has been associated with several infectious agents including Epstein–Barr Virus, Q fever, influenza, and other coronaviruses. There are important similarities between post-acute COVID-19 symptoms and ME/CFS. However, there is currently insufficient evidence to establish COVID-19 as an infectious trigger for ME/CFS. Further research is required to determine the natural history of this condition, as well as to define risk factors, prevalence, and possible interventional strategies.
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Background Many patients with COVID-19 did not require hospitalisation, nor underwent COVID-19 testing. There is anecdotal evidence that patients with “mild” COVID-19 may complain about persistent symptoms, even weeks after the infection. This suggests that symptoms during the infection may not resolve spontaneously. The objective of this study was to assess whether multiple relevant symptoms recover following the onset of symptoms in hospitalised and nonhospitalised patients with COVID-19. Methods A total of 2113 members of two Facebook groups for coronavirus patients with persistent complaints in the Netherlands and Belgium, and from a panel of people who registered on a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, date of symptoms onset, COVID-19 diagnosis, healthcare utilisation, and the presence of 29 symptoms at the time of the onset of symptoms (retrospectively) and at follow-up (mean± sd 79±17 days after symptoms onset). Results Overall, 112 hospitalised patients and 2001 nonhospitalised patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (median (interquartile range) 14 (11–17) versus 6 (4–9); p<0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%). Conclusion In previously hospitalised and nonhospitalised patients with confirmed or suspected COVID-19, multiple symptoms are present about 3 months after symptoms onset. This suggests the presence of a “post-COVID-19 syndrome” and highlights the unmet healthcare needs in a subgroup of patients with “mild” or “severe” COVID-19.
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Background: A large sample of "mild" COVID-19 patients still experience multiple symptoms months after being infected. These persistent symptoms are associated with many clinically relevant outcomes, including poor health status and impaired functional status. To date, no information is available about care dependency. Therefore, we aimed to explore the level of care dependency and the need for assistance with personal care in non-hospitalized COVID-19 patients. Methods: Members of two Facebook groups for COVID-19 patients with persistent complaints in The Netherlands and Belgium, and from a panel of people who registered at a website of the Lung Foundation Netherlands, were assessed for demographics, pre-existing comorbidities, health status, and symptoms. In addition, patients were asked about their dependence on others for personal care before and after the infection. The level of care dependency was assessed with the Care Dependency Scale (CDS) in members of the Belgian Facebook group (n = 210). Results: The data of 1837 non-hospitalized patients (86% women; median (IQR) age: 47 (38-54)) were analyzed. Only a small proportion of patients needed help with personal care before COVID-19, but the care need increased significantly after the infection (on average 79 ± 17 days after the onset of symptoms; 7.7% versus 52.4%, respectively; p < 0.05). The patients had a median (IQR) CDS score of 72 (67-75) points, and 31% of the patients were considered as care-dependent (CDS score ≤ 68 points). Conclusions: COVID-19 has an important impact on care dependency in non-hospitalized patients. About three months after the onset of symptoms, a considerable proportion of non-hospitalized patients were to some degree dependent on others for personal care. This indicates that the impact of COVID-19 on patients' daily lives is tremendous, and more attention is needed to identify optimal treatment strategies to restore patients' independency.
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Provides a clear framework for primary care practitioners reviewing patients with ongoing symptoms following infection with SARS-COV-2
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Background Data for front-line health-care workers and risk of COVID-19 are limited. We sought to assess risk of COVID-19 among front-line health-care workers compared with the general community and the effect of personal protective equipment (PPE) on risk. Methods We did a prospective, observational cohort study in the UK and the USA of the general community, including front-line health-care workers, using self-reported data from the COVID Symptom Study smartphone application (app) from March 24 (UK) and March 29 (USA) to April 23, 2020. Participants were voluntary users of the app and at first use provided information on demographic factors (including age, sex, race or ethnic background, height and weight, and occupation) and medical history, and subsequently reported any COVID-19 symptoms. We used Cox proportional hazards modelling to estimate multivariate-adjusted hazard ratios (HRs) of our primary outcome, which was a positive COVID-19 test. The COVID Symptom Study app is registered with ClinicalTrials.gov, NCT04331509. Findings Among 2 035 395 community individuals and 99 795 front-line health-care workers, we recorded 5545 incident reports of a positive COVID-19 test over 34 435 272 person-days. Compared with the general community, front-line health-care workers were at increased risk for reporting a positive COVID-19 test (adjusted HR 11·61, 95% CI 10·93–12·33). To account for differences in testing frequency between front-line health-care workers and the general community and possible selection bias, an inverse probability-weighted model was used to adjust for the likelihood of receiving a COVID-19 test (adjusted HR 3·40, 95% CI 3·37–3·43). Secondary and post-hoc analyses suggested adequacy of PPE, clinical setting, and ethnic background were also important factors. Interpretation In the UK and the USA, risk of reporting a positive test for COVID-19 was increased among front-line health-care workers. Health-care systems should ensure adequate availability of PPE and develop additional strategies to protect health-care workers from COVID-19, particularly those from Black, Asian, and minority ethnic backgrounds. Additional follow-up of these observational findings is needed. Funding Zoe Global, Wellcome Trust, Engineering and Physical Sciences Research Council, National Institutes of Health Research, UK Research and Innovation, Alzheimer's Society, National Institutes of Health, National Institute for Occupational Safety and Health, and Massachusetts Consortium on Pathogen Readiness.
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Background There is currently very limited information on the nature and prevalence of post‐COVID‐19 symptoms after hospital discharge. Methods A purposive sample of 100 survivors discharged from a large University hospital were assessed 4‐ 8 weeks after discharge by a multidisciplinary team of rehabilitation professionals using a specialist telephone screening tool designed to capture symptoms and impact on daily life. EQ‐5D‐5L telephone version was also completed. Results Participants were between 29 and 71 days (mean 48 days) post‐discharge from hospital. Thirty‐two participants required treatment in intensive care (ICU group) and 68 were managed in hospital wards without needing ICU care (ward group). New illness‐related fatigue was the most common reported symptom by 72% participants in ICU group and 60.3% in ward group. The next most common symptoms were breathlessness (65.6% in ICU group; 42.6% in ward group) and psychological distress (46.9% in ICU group; 23.5% in ward group). There was a clinically significant drop in EQ5D in 68.8% in ICU group and in 45.6% in ward group. Conclusions This is the first study from the United Kingdom (UK) reporting on post‐discharge symptoms. We recommend planning rehabilitation services to manage these symptoms appropriately and maximise the functional return of COVID‐19 survivors. This article is protected by copyright. All rights reserved.
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The novel coronavirus disease 2019 (COVID-19) pandemic is a global crisis, challenging healthcare systems worldwide. Many patients present with a remarkable disconnect in rest between profound hypoxemia yet without proportional signs of respiratory distress (i.e. happy hypoxemia) and rapid deterioration can occur. This particular clinical presentation in COVID-19 patients contrasts with the experience of physicians usually treating critically ill patients in respiratory failure and ensuring timely referral to the intensive care unit can, therefore, be challenging. A thorough understanding of the pathophysiological determinants of respiratory drive and hypoxemia may promote a more complete comprehension of a patient’s clinical presentation and management. Preserved oxygen saturation despite low partial pressure of oxygen in arterial blood samples occur, due to leftward shift of the oxyhemoglobin dissociation curve induced by hypoxemia-driven hyperventilation as well as possible direct viral interactions with hemoglobin. Ventilation-perfusion mismatch, ranging from shunts to alveolar dead space ventilation, is the central hallmark and offers various therapeutic targets. Full text: https://rdcu.be/b5VgE
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Importance Coronavirus disease 2019 (COVID-19) continues to cause considerable morbidity and mortality worldwide. Case reports of hospitalized patients suggest that COVID-19 prominently affects the cardiovascular system, but the overall impact remains unknown. Objective To evaluate the presence of myocardial injury in unselected patients recently recovered from COVID-19 illness. Design, Setting, and Participants In this prospective observational cohort study, 100 patients recently recovered from COVID-19 illness were identified from the University Hospital Frankfurt COVID-19 Registry between April and June 2020. Exposure Recent recovery from severe acute respiratory syndrome coronavirus 2 infection, as determined by reverse transcription–polymerase chain reaction on swab test of the upper respiratory tract. Main Outcomes and Measures Demographic characteristics, cardiac blood markers, and cardiovascular magnetic resonance (CMR) imaging were obtained. Comparisons were made with age-matched and sex-matched control groups of healthy volunteers (n = 50) and risk factor–matched patients (n = 57). Results Of the 100 included patients, 53 (53%) were male, and the median (interquartile range [IQR]) age was 49 (45-53) years. The median (IQR) time interval between COVID-19 diagnosis and CMR was 71 (64-92) days. Of the 100 patients recently recovered from COVID-19, 67 (67%) recovered at home, while 33 (33%) required hospitalization. At the time of CMR, high-sensitivity troponin T (hsTnT) was detectable (3 pg/mL or greater) in 71 patients recently recovered from COVID-19 (71%) and significantly elevated (13.9 pg/mL or greater) in 5 patients (5%). Compared with healthy controls and risk factor–matched controls, patients recently recovered from COVID-19 had lower left ventricular ejection fraction, higher left ventricle volumes, higher left ventricle mass, and raised native T1 and T2. A total of 78 patients recently recovered from COVID-19 (78%) had abnormal CMR findings, including raised myocardial native T1 (n = 73), raised myocardial native T2 (n = 60), myocardial late gadolinium enhancement (n = 32), and pericardial enhancement (n = 22). There was a small but significant difference between patients who recovered at home vs in the hospital for native T1 mapping (median [IQR], 1122 [1113-1132] ms vs 1143 [1131-1156] ms; P = .02) but not for native T2 mapping or hsTnT levels. None of these measures were correlated with time from COVID-19 diagnosis (native T1: r = 0.07; P = .47; native T2: r = 0.14; P = .15; hsTnT: r = −0.07; P = .50). High-sensitivity troponin T was significantly correlated with native T1 mapping (r = 0.35; P < .001) and native T2 mapping (r = 0.22; P = .03). Endomyocardial biopsy in patients with severe findings revealed active lymphocytic inflammation. Native T1 and T2 were the measures with the best discriminatory ability to detect COVID-19–related myocardial pathology. Conclusions and Relevance In this study of a cohort of German patients recently recovered from COVID-19 infection, CMR revealed cardiac involvement in 78 patients (78%) and ongoing myocardial inflammation in 60 patients (60%), independent of preexisting conditions, severity and overall course of the acute illness, and time from the original diagnosis. These findings indicate the need for ongoing investigation of the long-term cardiovascular consequences of COVID-19.
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Background Health-care workers constitute a high-risk population for acquisition of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infection. Capacity for acute diagnosis via PCR testing was limited for individuals with mild to moderate SARS-CoV-2 infection in the early phase of the COVID-19 pandemic and a substantial proportion of health-care workers with suspected infection were not tested. We aimed to investigate the performance of point-of-care and laboratory serology assays and their utility in late case identification, and to estimate SARS-CoV-2 seroprevalence. Methods We did a prospective multicentre cohort study between April 8 and June 12, 2020, in two phases. Symptomatic health-care workers with mild to moderate symptoms were eligible to participate 14 days after onset of COVID-19 symptoms, as per the Public Health England (PHE) case definition. Health-care workers were recruited to the asymptomatic cohort if they had not developed PHE-defined COVID-19 symptoms since Dec 1, 2019. In phase 1, two point-of-care lateral flow serological assays, the Onsite CTK Biotech COVID-19 split IgG/IgM Rapid Test (CTK Bitotech, Poway, CA, USA) and the Encode SARS-CoV-2 split IgM/IgG One Step Rapid Test Device (Zhuhai Encode Medical Engineering, Zhuhai, China), were evaluated for performance against a laboratory immunoassay (EDI Novel Coronavirus COVID-19 IgG ELISA kit [Epitope Diagnostics, San Diego, CA, USA]) in 300 samples from health-care workers and 100 pre-COVID-19 negative control samples. In phase 2 (n=6440), serosurveillance was done among 1299 (93·4%) of 1391 health-care workers reporting symptoms, and in a subset of asymptomatic health-care workers (405 [8·0%] of 5049). Findings There was variation in test performance between the lateral flow serological assays; however, the Encode assay displayed reasonable IgG sensitivity (127 of 136; 93·4% [95% CI 87·8–96·9]) and specificity (99 of 100; 99·0% [94·6–100·0]) among PCR-proven cases and good agreement (282 of 300; 94·0% [91·3–96·7]) with the laboratory immunoassay. By contrast, the Onsite assay had reduced sensitivity (120 of 136; 88·2% [95% CI 81·6–93·1]) and specificity (94 of 100; 94·0% [87·4–97·8]) and agreement (254 of 300; 84·7% [80·6–88·7]). Five (7%) of 70 PCR-positive cases were negative across all assays. Late changes in lateral flow serological assay bands were recorded in 74 (9·3%) of 800 cassettes (35 [8·8%] of 400 Encode assays; 39 [9·8%] of 400 Onsite assays), but only seven (all Onsite assays) of these changes were concordant with the laboratory immunoassay. In phase 2, seroprevalence among the workforce was estimated to be 10·6% (95% CI 7·6–13·6) in asymptomatic health-care workers and 44·7% (42·0–47·4) in symptomatic health-care workers. Seroprevalence across the entire workforce was estimated at 18·0% (95% CI 17·0–18·9). Interpretation Although a good positive predictive value was observed with both lateral flow serological assays and ELISA, this agreement only occurred if the pre-test probability was modified by a strict clinical case definition. Late development of lateral flow serological assay bands would preclude postal strategies and potentially home testing. Identification of false-negative results among health-care workers across all assays suggest caution in interpretation of IgG results at this stage; for now, testing is perhaps best delivered in a clinical setting, supported by government advice about physical distancing. Funding None.
Article
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