Follow-up of patients post-COVID

Morning musings.....

Interested to know what people in primary care are doing with regards to follow up of patients who have either been discharged from hospital or from a red hub who don't meet criteria for admission. For those patients locally who have been on  ICU they will be followed up in secondary care at 3 months but there is nothing official for all the rest other than a 'patient information leaflet and to contact your GP'.

Are people maintaining a register of suspected/known cases with moderate symptoms and actively following them up on a regular/daily basis in order to proactively manage deterioration?

If patients remain breathless and they don't have access to a sats probe at home should we be getting them in for face to face assessment for O2 sats measurement and/or 10 metre walk? Are we advising them to buy a sats probe? 

How do you  determine whether their breathlessness is just the normal sequelae of recovery or is it a PE? Do we only do something if their breathlessness gets worse? Can be subjective. What role does d-dimer play? 

Thanks in advance

Vince Mak Steve Holmes Andrew Booth Lisa Chandler Noel Rob Daw

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    • Andrew Booth
    • Primary Care Respiratory Nurse and clinical tutor
    • Andrew_Booth
    • 6 mths ago
    • 3
    • Reported - view

    I don't believe we have had anyone with Covid-19 admitted / discharged yet, but you make a good point about maintaining a register of cases. This might be especially prudent if I understand correctly that post-Covid complications may include pulmonary fibrosis (Lancet Respiratory, 15 May) plus post traumatic mental health issues.

    Our GPs have purchased 30 extra pulse oximeters, and set up a process for patients using these, and decontamination afterwards. The patient collects their oximeter from the car park, we observe them taking their SpO2, patient places it in a bag, and an HCA collects it from them. It sounds very Heath Robinson, but is quite slick in practice.

    As far as ruling-out PE, I think this is being done on the basis of clinical history / speed of onset of symptoms. I'm not sure if d-dimer testing has been used yet. 

    Like 3
    • Rob Daw
    • Respiratory Nurse Practitioner
    • Rob_Daw
    • 6 mths ago
    • 2
    • Reported - view

    I've seen quite a few and they weren't on a register. I think this is definitely something we need to think about. They were all still quite breathless 3+ weeks down the line and there doesn't seem to be any way of knowing if this is normal recovery or we need to be concerned. There's gradual recovery in them as you would see in anyone who had gone through a serious illness and they were still mildly hypoxic but is this just normal recovery, fibrosis or a thromboembolic event? I've not been doing D-dimer's because as far as I can tell, there is a very strong possibility it will be positive and I wasn't sure whether it was going to inform my decision making. What I am sure about is that they need investigating, especially the ones who got to a red hub but not into hospital. The breadth of symptoms COVID-19 could possibly cause means that you can put just about anything down to it. I have already seen someone who tested Positive for COVID, was seen by the red hub and all symptoms (weight loss, cough, pyrexia, lethargy, muscle atrophy, hypoxia, confusion) there on were attributed to the COVID, not without good reason but when 4 weeks later he was investigated he  had other significant pathology. If we are going to investigate, this would surely involve a CT chest and so if they remain hypoxic 4 weeks later is the argument that we should do a CTPA on the basis that the radiologist would likely see Fibrosis and/or multifocal PE's? The big question for me is what is a normal length of recovery in terms of respiratory signs and symptoms?

    Like 2
  • In the area I work we are in the process of setting up a post covid-19 discharge pathway so involving primary care, community respiratory teams and also secondary care. We are having traffic light system and depending on pt symptoms will depend on which arm of the traffic light they go to. Our patients being discharged from hospital are having a 6 week follow up with a secondary care respiratory physician and monitoring by our primary care respiratory service during those 6 weeks with escalation if required to the community respiratory team attached to secondary care. We will have access to a respiratory consultant for advice/guidance if necessary with varying response times depending on urgency of this.

    We are still discussing ironing out some logistics for this at  present. As respiratory nurses we would like a formal algorithm to follow when doing these calls  to include how they are feeling, how their health is, any anxiety depression, breathlessness etc and what to do if responses - we are going to put this forward as we would be asking the questions and making the calls so there needs to be consistency throughout - what would you want to know from patients?

    One of the things which is being discussed by my team is as you have said Katherine Hickman how do we assess a patients breathlessness - it has been suggested from secondary care we use counting in one breath however there is little/no evidence this is a valid form of assessment and would be subjective. How do we assess if someone is breathless over the phone? Would asking them to tell you their full name and address be more objective as can count number of pauses? Is there another way this can be done if not all patients have access to a saturation probe? 

    Like 1
  • Hi all. Joining discussion late with a supplementary question. I'm guessing some of you have already moved beyond the point we are at. We've started discussions about post Covid follow-up, who gets face to face 2y care, separate ITU/respiratory calls, RAG type classification according to severity (long/short time on vent, ICU, ward, community), and also post Covid REHAB. As we develop a virtual PR offering for COPD, we are also wondering about Covid patients. We developed a local leaflet with hints, tips and signposts. Input from other rehab services like CFS/ME, ICU, physio, wellbeing and selfcare, dietetics so opportunity to develop something quickly.

    Anyone out there already doing it? Any pointers? Can we steal your ideas?!

    Thanks, Stephen

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  • Hi everyone, sorry to ask again on this subject! Anyone developed a pathway for post inpatient follow up and something for post community management follow up please?

    Would you share with West Yorkshire? Full credit given we promise Katherine Hickman Andrew Booth Rob Daw anything local?

     Noel   anything from London please?

    Like 1
    • Hi Lisa Chandler There is something in the pipeline and I have commented on it but not sure where its at right now Vince Mak is the London network lead. Btw I'm not working in London anymore. Also just to highlight to everyone the AUK-BLF Post COVID Hub https://www.post-covid.org.uk

      Like 4
    • Noel Apologies, i did try and tag Vince but it wouldnt let me!

      Thank you both

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    • Lisa Chandler Hi Lisa, PCRS have the following two resources posted so far re post-COVID care https://bit.ly/2UMH5vU and https://bit.ly/30LHhPU

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    • Lisa Chandler Happy to share what we have developed locally, which is very much along the lines of the BTS model.  This is for patients who were hospitalised; we are contacting at 6-8 weeks and investigating based on initial severity and ongoing symptoms.  Multidisciplinary effort in Gloucestershire.

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    • Charlie Sharp Thank you

      Lisa

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  • There’s a few documents being developed locally. Woukd be good to have a folder on the Covid resources page. I’ll speak to Tricia

    Like 1
    • Rob Daw
    • Respiratory Nurse Practitioner
    • Rob_Daw
    • 4 mths ago
    • 1
    • Reported - view

    Just an additional question and apologies if its slightly off topic. Has anyone come across anyone developing post COVID asthma. Nothing in their history to suggest asthma previously. Not atopic. Not hospitalised with COVID but confirmed case. Positive response to both oral and inhaled steroids and variable peak flows. Classic symptoms of asthma except for the lack of atopy. Seen a couple now, wondered if it was becoming a pattern?

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      • Andrew Booth
      • Primary Care Respiratory Nurse and clinical tutor
      • Andrew_Booth
      • 4 mths ago
      • 1
      • Reported - view

      Funnily enough, yesterday I had someone who has Covid symptoms and new asthma symptoms.  I've organised home peak flows and a Covid test for them.

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      • Rob Daw
      • Respiratory Nurse Practitioner
      • Rob_Daw
      • 4 mths ago
      • Reported - view

      Andrew Booth Probably a coincidence I guess but I am interested to know if there are more

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      • Andrew Booth
      • Primary Care Respiratory Nurse and clinical tutor
      • Andrew_Booth
      • 4 mths ago
      • 1
      • Reported - view

      just stumbled across this: https://www.post-covid.org.uk. Lots about ARDS but nothing specifically about asthma.

      Like 1
  • https://erj.ersjournals.com/content/56/1/2001494?ctkey=shareline&utm_medium=shareline&utm_source=01494-2020&utm_campaign=shareline Post-COVID-19 Functional Status scale: a tool to measure functional status over time after COVID-19. Hope the link works

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  • Thankyou for the useful resources shared above. In Lancashire we have some work streams looking at rehab post covid - I was in a meeting this morning where the staff said that there is a much broader range of needs than the usual "PR" patients . quite a range of post covid sequelae that are not just related to cardiovascular.   Our aim is to get patients using digital tools and resources whilst on the ward so that these skills can be continued in the community . Hopefully this will also include schemes to load people the digital kit if they don't have it or cannot afford it .   

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  • Hi stuart, just putting in a bid to fund a loan scheme.

    Can you tell me if staff show the patient how to use the tablet please?

    Thanks

    lisa

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  • Have you seen this paper which indicates that there is a very slow recovery post COVID even if people have not had COVID severely enough to need hospitalisation https://openres.ersjournals.com/content/erjor/early/2020/09/01/23120541.00542-2020.full.pdf

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    • Rob Daw
    • Respiratory Nurse Practitioner
    • Rob_Daw
    • 2 mths ago
    • Reported - view

    Thanks for that Amanda Roberts > Really interesting and confirming what I'm sure what we are all seeing. It's just really difficult for all those patients who either never had a test because it was too early on in the outbreak or had tests which you assume are false negative. You assume the symptoms relate to long COVID but how far do you investigate before accepting this conclusion? Antibody tests no help either, I have a whole office of patients who had positive antigen tests and then negative antibodies 3 months later.

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