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Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services, 2020, Greenhalgh et al.

Discussion in 'Epidemics (including Covid-19)' started by Dx Revision Watch, Oct 14, 2020.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Preprint paper here:

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

    Emma Ladds, Alexander Rushforth, Sietse Wieringa, Sharon Taylor, Clare Rayner, Laiba Husain, Trisha Greenhalgh


    This article is a preprint and has not been certified by peer review [what does this mean?]. It reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice.


    https://www.medrxiv.org/content/10.1101/2020.10.13.20211854v1

    PDF: https://www.medrxiv.org/content/10.1101/2020.10.13.20211854v1.full.pdf


    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 other 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. Approximately 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 described feeling fobbed off); and possible critical events (e.g. deterioration after being unable to access services).

    Emotional touch points in participant 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.

    Competing Interest Statement
    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.

    Clinical Trial
    NCT04435041

    Funding Statement
    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.

    Author Declarations
    I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained.

    Yes

    The details of the IRB/oversight body that provided approval or exemption for the research described are given below:

    Leicester Central Research Ethics Committee (IRAS Project ID: 283196; REC ref 20/EM0128)

    All necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived.

    Yes

    I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance).

    Yes

    I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable.

    Yes

    Paper in collection COVID-19 SARS-CoV-2 preprints from medRxiv and bioRxiv


    Edited to remove DOI URL as given on the paper's webpage, as URL does not point.
     
    Last edited: Oct 14, 2020
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  2. Leila

    Leila Senior Member (Voting Rights)

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    I just read this.

    It's great they study LongC, but I don't see how these results are different from any other chronic, "invisible" and/or underdiagnosed illness? Including uncertainty of prognosis...

    The only thing "new" is the cause but the effects seem to be the same.

    I know the purpose is to improve services, but "patients are suffering, take them seriously" as message to health care providers had not been very successfull so far, in general.
     
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  3. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    What does this mean? I have no idea what a touch point is, let alone an emotional one. If it means things people were emotional about........ I'd think suggestions for services should be based on identified need rather than emotions? Possibly I'm being very stupid.

    What do the authors mean by multi-disciplinary? Is it simply to say that as the need for different specialist input becomes clear that's added? Do they already have a set of disciplines in mind & if so who and why?

    Why rehabilitation? What exactly do they mean? Does this include ongoing care and support to improve quality of life for those who don't seem to improve or is it assumed everyone will be cured? How do they know what's needed and given the heterogenity who is likely to respond & who isn't? Can they be confident that non responders to treatment won't be harmed? I doubt it.

    What is evidence based investigation? Who sets the bar for the level and quality of evidence required? Will this be policed in some way or is it okay for some people to just do their own thing under the false impression that what they think is good enough will do?
     
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  4. Leila

    Leila Senior Member (Voting Rights)

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    I think since Covid affects so many organs/systems they need specialists from different fields like cardiology, neurology etc. and, most likely, psychology?

    I know that rehab facilities for post intensive care and post sepsis patients have all these, including occupational therapists etc.

    Problem is, when pwLongC meet ICC ME criteria with PENE (versus those with, e.g., lung damage related fatigue), I don't see what any specialized service/rehab can do for them. Other than teaching Pacing, which they most likely won't.
     
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  5. Trish

    Trish Moderator Staff Member

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    I have read it and from memory summarise it as:

    People with long covid either have symptoms resulting from damage to organs such as lungs, kidneys and heart, and things like blood clots and vasculitis (inflammation of blood vessels), or 'fatigue' or both.

    NHS services have mostly been useless, fobbing them off with 'anxiety' or giving them the run around from the telephone line 111 intended for acute patients and GP's passing the buck back and forth, and difficulty getting access to GP's and getting taken seriously

    Those with good GP experience report being listened to, believed, supported, and referred for specialist tests as symtoms suggest (eg heart tests)

    Most get most of their help and support from patient online groups on slack or facebook

    The solution proposed is better trained GP's and specialist services (unspecified) for assessment and 'rehabilitation'.

    So nothing new, but good to get it in print that services for people with such disabling chronic symptoms are mostly crap, and many GP's are useless at dealing with them.

    Brief mention that some now understand better the experence of pwME, and some with fatigue think it's like ME or CFS and others think it's not the same.
     
  6. Mij

    Mij Senior Member (Voting Rights)

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    How many of these services are experienced in post-infectious autonomic dysfunction?

    ME is so not about fatigue.
     
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Not a term I am familiar with, either:


    https://www.fons.org/resources/documents/Creating-Caring-Cultures/EmotionalTouchpoints-.pdf

    "Using Emotional Touchpoints to Understand Experiences of Care

    What are emotional touchpoints?


    ‘A touchpoint is any moment where a user interacts in some way with the service’ (NHS Institute Innovation and Improvement, 2009). Examples could be; arriving on the ward, talking with a nurse, waking up after surgery, mealtimes, being discharged etc. Emotional touchpoints ‘are the moments where the person recalls being touched emotionally (feelings) or cognitively (deep and lasting memories)’ (Scottish Health Council website). They can be 'big moments' in a patient’s contact with a service or 'small acts' that have a huge impact on an individual whilst maybe not seeming significant to others. Why are they helpful? Evidence suggests that these subjective experiences are an effective way of exploring and understanding practice, enabling celebration and stimulating innovation and development (Bate and Robert, 2007; Dewar and Noble, 2013)..."


    Paper:

    https://www.napier.ac.uk/research-a...d-of-tapping-into-the-experience-of-receiving

    Dewar, B., Mackay, R., Smith, S., Pullin, S., & Tocher, R. (2010). Use of emotional touchpoints as a method of tapping into the experience of receiving compassionate care in a hospital setting. Journal of Research in Nursing, 15(1), 29-41. https://doi.org/10.1177/1744987109352932
     
  8. chrisb

    chrisb Senior Member (Voting Rights)

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    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.

    People will remember the Tweet from Greenhalghe about the letter saying a GP didn't believe a participant. Unfortunately if the GP had some suspicion that this had been going on he might well have been doubtful. It's difficult for both sides, especially when GPs seemed not to be giving appointments and the political imperative was to save the NHS. I make no criticism of desperate people, but the danger of reinforcing pre-formed views is obvious.
     
  9. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Only mention I found of ME/CFS:

    The conclusion states:
    Unique?


    As far as I can see there is no explanation of what the multi-disciplinary rehabilitation services should look like. This (from Box 1) doesn’t really tell us much:
    I couldn’t see any mention of pacing or PEM, which is odd as lots of long-haulers seem to have been talking about them. Also no mention of the CBT/GET elephant in the room.


    Also from Box 1:
    But how should they be developed? Where is the evidence going to come from? I’ve only skimmed it but I couldn’t see any mention of drawing on existing literature for other similar conditions, or testing “standards and protocols” in RCTs. I fear this may mean people making stuff up and publishing it as fact for others to copy without any reliable evidence that it works or is safe, as happened with ME/CFS.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    That would most likely fall to FND, or maybe vague MUS "liaison psychiatry" or whatever. So... very bad outlook.
     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah, well, there's a good reason we are not familiar with that concept. That sounds great, I would love to experience that one day. Sounds like a good idea.
     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Ah. Okay. What we used to call customer service - the customer could be an external client or a colleague. The golden rule being even if you can't help the customer should never be left feeling negative about the service. Even if that service is simply redirecting someone whose called the wrong number.

    We had a great & simple way of dealing with this and one of the best use of questionnaires I ever seen. They would ask people we had dealings with internal, junior & senior colleagues plus customers. The higher your ratings the more of your possible bonus you got.

    If your rating were poor then potentially appropriate training or mentoring, loss of bonus and ultimately disciplinary if you didn't pull your socks up.

    No fancy schmancy terminology. Do your job, have a good attitude and manner or be penalized. Seemed fair to me. Effective too.
     
  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Not a bad report, in isolation, but in context it's very underwhelming. It would only take replacing a few words here and there and it reads identical to any discriminated chronic illness, including us. In fact there are dozens of similar papers that read exactly like it, yet they feel the need to frame this in complete isolation, as a unique thing that has no counterpart. Very silly.

    The speed at which the report was produced is worth some praise. The NIH PEM paper is just barely more substantial and it took 3 years to produce. However it reads very much exactly like more of the same, despite the need to explicitly separate from us, hard to understand considering that it is all but guaranteed that none of those clinicians have any clue about what ME actually is and can't possibly compare to it:
    So they give a physical attribution to symptoms, the very thing that is used to dismiss us. So again, exactly the same, just have to blank a few words and any other similar report on any other discriminated illness would read the same.

    The clinicians who produced this are clearly oblivious to ME, post-viral illness and chronic illness in general, see no connection between identical things and feel the need to separate things that they have no actual understanding of. Despite this, they feel confident enough to argue there are clear differences, itself a serious problem, actually the same old problem as always.

    As a report on any similar patient population produced in the last half-century, this is a fine report. But there are many like it, speaking to the much broader and significant issue that medicine has done a catastrophically poor job at dealing with chronic illness, especially those that follow an infectious disease, something that is not even close to be addressed here, in fact the whole thing is completely naïve of it all. Which all but guarantees failure unless things are turned over quickly, especially with the weird insistence on rehabilitation despite the fact that we have no clue what the issue is, let alone what needs to be rehabilitated.

    I was afraid that past attachment to BPS/MUS/FND would be a problem but it does appear that those fears are confirmed, the same issue that has plagued medicine for decades is yet again being botched because of people who have significant misunderstanding of the issue, its context and impact, so much that they frame the oldest, most significant, failure in medicine as, yet again, brand new and detached from its hundreds, maybe thousands, of past iterations.

    Old wine in old bottles. Again and again.
     
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  14. Leila

    Leila Senior Member (Voting Rights)

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    From what I understand from the linked source these touchpoints can also be negative.

    I had plenty of those in my "customer journey" with doctors where it sometimes was just one inappropriate comment that would keep me away from persuing a certain path (e.g. finding the cause for a symptom) for yrs.

    Edit: So I do get their significance, but again, this is not a unique LongC experience.
     
  15. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    This is just plain bad. I hope it is rejected for publication because stuff like this is totally unhelpful.
    I am used to manuscripts like this from therapists doing higher degrees wanting some papers for their CV but to have something like this from someone who is both a professor and a member of a guideline committee shows just how broken things are.

    The first key problem that makes the whole piece a nonsense is the complete lack of any control over sampling. It seems they used twitter and 'snowballing' rather than any systematic method of recruitment.

    So they end up asking for people with weird symptoms after Covid and sure they get a mix of the weirdest. The symptoms may well be diverse and difficult to explain but this to me is the same methodology that the MESpine group uses to generate totally meaningless and misleading data.

    the second key problem is that the study is used as an excuse to recommend a care package - when there is nothing in the paper that tells us what that should be.

    The whole thing demonstrates just how much of a Wizard of Oz the Cochrane and Co brigade really is. This is like school kids putting on a mock election that has bio relation to reality. The scary bit is that this sort of thing is likely to be used for healthcare policy.

    I give up.
     
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  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    And no, this is not a preprint.

    A preprint is a peer reviewed paper that is released prior to printing, as a reprint is released after printing.
     
  17. strategist

    strategist Senior Member (Voting Rights)

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    They also say ME/CFS and long covid are different on the basis that the fatigue is different. Given that fatigue is subjective and we cannot know how another person's fatigue feels like, this seems questionable. They then ignore postexertional malaise entirely despite one quoted patient clearly making a link between a small increase in activity and a next day worsening.
     
    Last edited: Oct 14, 2020
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  18. Trish

    Trish Moderator Staff Member

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    I must admit when I read it I learned nothing new that I couldn't read all over social media.

    The only good thing about it, it seems to me, is that it demonstrates that the NHS has no clue what to do with people with post covid symptoms, and is floundering around pretending that papers like this are a useful contribution.
     
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    But who does it demonstrate that to, other than us?
    A rhetorical question.
     
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  20. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    https://www.medrxiv.org/content/10.1101/2020.10.13.20211854v1

    This article is a preprint and has not been certified by peer review [what does this mean?]. It reports new medical research that has yet to be evaluated and so should not be used to guide clinical practice.



    https://www.medrxiv.org/content/what-unrefereed-preprint

    What is an unrefereed preprint?

    Before formal publication in a scholarly journal, scientific and medical articles are traditionally certified by “peer review.” In this process, the journal’s editors take advice from various experts—called “referees”—who have assessed the paper and may identify weaknesses in its assumptions, methods, and conclusions. Typically a journal will only publish an article once the editors are satisfied that the authors have addressed referees’ concerns and that the data presented support the conclusions drawn in the paper.

    Because this process can be lengthy, authors use the medRxiv service to make their manuscripts available as “preprints” before certification by peer review, allowing other scientists to see, discuss, and comment on the findings immediately. Readers should therefore be aware that articles on medRxiv have not been finalized by authors, might contain errors, and report information that has not yet been accepted or endorsed in any way by the scientific or medical community.

    We also urge journalists and other individuals who report on medical research to the general public to consider this when discussing work that appears on medRxiv preprints and emphasize it has yet to be evaluated by the medical community and the information presented may be erroneous.
     
    Last edited by a moderator: Oct 15, 2020

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