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This is Dr Robina Coker’s talk from the Sarcoidosis Patient Day in which she speaks about COVID-19 and Sarcoidosis – Risk and Change in Management/Monitoring. 

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This video was recorded on 1st April 2021 as part of the Sarcoidosis Patient Day. You can read a transcript of the video below.

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Peter: Dr Robina Coker is a consultant respiratory physician Imperial College NHS trust. She runs the sarcoid service in-house of a large service, but very senior role was not just within her trust but also within the region. She’s the Clinical Director for the NIHR  West London; it’s a lot of abbreviations. I’m getting tongue-tied even though I’m part of it, so that’s embarrassing but I I’d like to pass over to Robina. You’re going to tell us all about Covid 19 and sarcoidosis and monitoring.

Robina: Thank you very much, Pete and , I’d like to thank the organisers of this symposium very much for inviting me, and it’s a real pleasure to be with you this afternoon. And, I’m sorry I had to join you a little late. So I’ve been asked to talk about covid19 and sarcoidosis, and despite Pete’s warm words, I doubt that I’m going to be able to answer all your questions, but I will do the best I can with the data that we have at the moment. And right through this talk, I’m going to try and think about what we should or could have done differently, perhaps or perhaps we wouldn’t have done anything differently. What can we be doing now, and what might we do differently in the future? And I’m going to touch on some of the amazing work that Lisa Spencer, whom you’ve just heard  did with the BTS, which undoubtedly made a huge difference to all of us. , and it has been a very, very difficult time, but there are some things we might take forward, and we might hold on to, so we’ll come up to talk about some of those  in a few minutes. And I’ve  addressed, trying to address some of your questions I’m really grateful for to those of you who’ve put questions in submitting questions in advance. They’re really good questions, and I’m not sure I’ve covered all of them, but I’ve tried to cover as many as possible. So I was asked to talk about risk and then changes in management and monitoring, so I’m going to talk a little bit about the risk of people with sarcoidosis catching Covid. And then I’m going to talk a little bit about the risk of serious illness when you’ve caught Covid. And of course last this time last year, we were very much focused on the risk of acute illness , but we know now that many people have long, longer-term symptoms what we now call long Covid , so I’m going to touch on that as well. And then I’m going to think about changes in management last year, this year, and beyond next year and I’m going to talk about monitoring as well as part of all that. So in terms of the risk of catching Covid, there’s really no evidence or rationale for an increased risk of catching Covid  just because you have sarcoidosis unless, of course, you are immunosuppressed, and that is the risk. , so if you’re on immunosuppressant medication, that will make anyone, including anyone with sarcoidosis, more susceptible to any infection, including Covid19. And this was the basis of the UK shielding advice like this time last year which initially included people on immunosuppression. But as Lisa mentioned, it was the BTS really that, , that moved  the goalposts and said actually we should be including all patients with ILD and sarcoidosis, and that was at the end of March  last year. And I’m sure this was this was definitely the right thing to do; we were very worried  about many of our patients, and you’ll see why  in a few moments. , so what about the risk of severe acute illness? Well, as early as early 2020, really so before the lockdown in the UK, , it was very clear from the data that were emerging from Wan that there was a greater risk of serious illness with Covid and indeed mortality if you had certain pre-existing conditions and those included established lung disease and the headline lung diseases were COPD and asthma. , but not surprisingly, there was nothing about ILD, really, and the data is still very limited.  Kesley Jenkins and a number of us published this international multi-centre study of over 160 patients with ILD in the blue journal at the end of last year, and that showed a higher mortality in patients with interstitial lung disease or parenchymal lung diseases, so changes on CT compared with match controls. But you can see here that there are only nine patients with sarcoidosis. The numbers are really very small, unsurprisingly, and there was a worse outcome linked to male gender, impaired lung function and obesity. And the impaired lung function is the important thing to note here because that’s going to come up again. The poorest survival in these groups was associated with patients who had a diagnosis of idiopathic pulmonary fibrosis followed by chronic hypersensitivity pneumonitis and rheumatoid associated interstitial lung disease and actually those with sarcoidosis had the lowest mortality in those groups but remember again very small numbers, so it’s quite difficult to draw any  conclusions. And then there was a New York study of over 7000 patients with just 37 sarcoidosis patients , and that showed that a diagnosis of sarcoidosis didn’t predict a worse outcome. It wasn’t associated with the worst outcome. But it was a worse outcome was associated with a moderate  to severe impairment of lung function whether you measured it  with spirometry or gas transfer in the last three years. So that really does seem to suggest that impaired lung function is important. And then in terms of immunosuppression and, as as Lisa’s alluded to, we were very worried initially about continuing patients on steroids and in fact, I had phone calls from surrounding hospitals quite a lot during the first four weeks saying we’ve just admitted one of your patients should we stop their steroids and I said no don’t stop their steroids. But it was a slight act of faith at the time I I felt for the reasons I’ll discuss later that it was important not to stop them , but nobody quite knew, and there was a lot of anxiety about steroids. Anyway, a retrospective North American cohort study of over 2000 patients in hospital with Covid and that was published earlier this year; they had a  5% were immunosuppressed. , and that showed that the those immunosuppressed patients didn’t have worse outcomes in terms of length of stay, risk of progressing to invasive ventilation so CPAP or intubation or indeed mortality. So that’s quite reassuring  insofar as it goes. And then what about the risk of long Covid. , very limited data so far, and NICE published a review of long Covid in December and in terms of risk factors, they looked at 13 studies, and they noted that the data were quite low quality. That’s not surprising. Of course, they were gathered quickly and during a pandemic, which made it very difficult to do, and the studies were often small, and there were a very wide range of risk factors that were identified. And the NICE reviewers felt that the risk of bias was really quite high or medium at best. And so they felt they were unable to draw firm conclusions on possible risk factors for long Covid, and the evidence that they gathered was not generalisable to the entire population. Because one of the reasons they did this was because they didn’t want to exclude anybody from long Covid clinics or access to support, and they emphasise it’s important to monitor anyone with symptoms of long Covid regardless of whether they’re perceived to have been at particular risk of long Covid. So that’s a bit on risk; what about change in management? So last year, the headlines were the shielding advice and Lisa’s talked very eloquently about that. , some of you may have been to hospital because urgent hospital visits were regarded as essential travel quite correctly. And the BTS advice, and I think it was absolutely the right advice, and it was it was what we were doing on the ground, was to advise patients to stay on their current medication if they were stable. And the aim was very much to use the lowest dose of  immunosuppression to control the condition. And I actually think that is good practice anyway. It’s what we should always be doing, but certainly being in the middle of a pandemic, focus the mind on that. And there was a very understandable and, I think, justifiable reluctance to increase immunosuppression or start new agents unless it was absolutely necessary. And so we had to assess everyone on an individual case-by-case basis, and again I would say that is the correct approach, , normally and is part of good clinical practice. And then, of course, towards the end of last year, there was a wider role out of the seasonal influenza vaccine, which may have impacted some of you here today. What about changes in monitoring? , well, most hospitals, if not all, very quickly moved to remote consultations, particularly during the first and second waves, either telephone and, in some cases, video. Lisa alluded to the fact that the lung function laboratories were almost completely closed. , a lot of that was due to the risk, as she’s talked about of  aerosol generation through the procedures that we do in lung function where we make you cough and blowhard. But of course, the other thing is that the respiratory physiology staff are highly skilled and in our case certainly  many of them, if not all of them were redeployed to ICU and acute respiratory units to help manage those. So , it was a double whammy really in terms of lung function, and that’s why it’s been so difficult, and it’s taken such a long time to get lung function restarted. We had reduced imaging capacity, and many of you will have been aware of that because you may have had tests cancelled. And that was partly the demands from in the Covid cases because every patient needed a chest x-ray, and many of them needed CT scans, but also, of course, because of infection control measures including social distancing so that just meant you couldn’t have as many people in the department at once, you had to make appointments,  you had to keep people apart. And you had to clean the facilities  more thoroughly than you would have done previously between each patient. So that just meant we couldn’t fit in as many people. On a more positive side, I think we made, in many cases, better use of community blood testing or phlebotomy, and some of you may have had recourse to home tests such as spirometry or blood tests. And that was very much up to community resources, facilities, clinician preference, patient preference and so on, but there were some changes that some of you may have been aware of. In terms of management this year, of course, the big headline are the vaccines we now have three approved in the UK, and I want to emphasise this incredible success, this headline figure of 82 to 95% protection against severe illness. And I want just to reflect on that because we should really be celebrating  and congratulating the people who’ve worked so hard on that. , when I did a seminar for a video for SarcoidosisUK in December with Anna Blackney, I well remember her beautiful Christmas tree. She’s a scientist who was working at Imperial College London has now moved to Canada to set up her own lab. She told us that Pfizer, remember Pfizer, an American company  with stretch targets, an eye on the bottom line, in April Pfizer, April 2020, they set a target of 70% protection against Covid for their vaccine. So they would have been delighted if they’d had 70%, they’ve ended up with 95%, and that’s a figure that’s unbelievably good. So these are really effective vaccines, , and the influenza vaccine, by contrast, has around 50% efficacy, but we don’t agonise every year about whether it’s worth having the flu vaccine. We do we do recommend it. So I’d just like to say what a wonderful achievement that was, and I know some of you have quite understandable concerns about whether the vaccines are safe if you’re immunocompromised. There’s no live virus in the vaccines, so they are safe for immunocompromised patients. We recommend every year that our immunosuppressed patients have the flu vaccine and the flu vaccine has no live virus in it. , the efficacy may be lower. There are studies showing that the influenza vaccine is less effective if you’re on with methotrexate or rituximab, but we still recommend it. And , I’ll come on later to say that to point this out, but of course, if you’ve got 95% protection as a headline figure, we would hope that you would get protection even if you’re immunosuppressed even if that efficacy is a bit lower. And of course, over 30 million now in the UK have now received their first dose, which is an amazing achievement. As Lisa mentioned, the UK shielding advice ended yesterday, many of you will be very delighted about that, I’m sure. I would just touch on travel advice for the future; a number of my patients are hoping to travel. Please remember that it won’t just be the UK government advice on holidays that we have to take into account. It will be the prevalence of Covid cases overseas; we’re seeing what’s happening in France at the moment and, of course, the presence of new variants. , and some of those variants may be relatively resistant to vaccines, it should be perfectly possible to tweak the vaccines, . But it may require a booster in the autumn, so we just got to be a little bit cautious about  planning our holidays just yet, I think. In terms of changes in monitoring  2021 and beyond, I foresee that certainly, for the moment, there’s likely to be a hybrid model of consultations. I think we’ve shown that remote visits in inverted commas do offer convenience; you can often have a consultation with your doctor in the comfort of your own home, you don’t have to travel to the hospital, you  don’t have to spend half an hour trying to find a car parking space and then find that the car parking machine  either doesn’t accept your credit card or you don’t have enough cash. , and of course, we’ve also shown that for many patients with long-standing respiratory conditions, there’s a much lower risk from respiratory infection if we all stay apart a little bit, , so that’s a benefit. But of course  remote consultation is not always suitable not everybody finds it easy to use the telephone  and so and it’s difficult to build up that rapport that you need if you’re managing a long-term condition I think  if you never see the person at the other end of the telephone. , so I suspect there will be a mix  not least because we still want to keep our waiting rooms from becoming overcrowded because we know that will increase the risk of community transmission not just of Covid but of everything. And I would hope that we can build better-shared care with our community services; many of our general practitioners have been fantastic in terms of offering  local blood services and so on, and for many of you, that may be much more convenient than coming to the hospital. , sorry, changes in management looking to 2022 and beyond. , I think the recommendations on immunosuppression are likely to continue, and as I say, I think that makes sense, and that’s good clinical practice. , some trusts are in using cloud technology to help store personal health information and allow you, the patient, to access your health records on your smartphone at any time so you can have your scans and your letters and your blood test results available. And you can share that information with whoever you wish to; you can upload your own information. , I think both with remote consultations and increasing use of technology, it’s really important that we build up good patient-clinician partnerships because, , this has to be done in partnership with you, the patient. , we need to know what you want, what works for you, and it needs to detail your needs. Clinical research is absolutely vital. Pete’s alluded to my role within the NIHR; I’m the clinical director for Northwest London Clinical Research Network. We led on the remap caps study, which showed that dexamethasone reduced  mortality significantly in seriously ill patients with Covid. We supported the recovery trial, and we’ve shown how important it is. So it absolutely needs to continue, and we need to think about taking part in research as part of our taking part in our receiving NHS care; you know what can we do? What can we contribute? And we talked. We heard a lot about  long Covid from Chris earlier  sorry I heard a lot about fatigue in sarcoidosis from Chris earlier. And I’m really hopeful that some of the research into long Covid  will give us a better understanding of sarcoidosis and particularly strategies to manage fatigue because it’s been very difficult to do studies  in fatigue and sarcoidosis. And you know there is funding now for research into long Covid, and I think it’s being taken seriously, so I’m optimistic and hopeful that actually  we might understand more about fatigue in sarcoidosis as a result of long Covid. So what have we learned in smary? We know that immunosuppression increases the risk of catching Covid, but it doesn’t appear to be linked to a worse outcome which is encouraging. We’ve learned that significantly impaired lung function, perhaps on perhaps unsurprisingly, does appear to be linked to worse outcomes. Would we give the shielding advice again in the future? Yes, I think we would; I think it was the right thing to do. We had an unknown virus. We had it circulating at very high levels in the community. We had an absence of  comprehensive  testing or tracing, so we couldn’t be sure where it was we couldn’t manage outbreaks, and I think it was the best way to protect people in the circumstances. It’s possible that you could refine it with what we know now, and it’s quite likely, of course, and I don’t want to be a  to to sound too pessimistic, but it’s perfectly conceivable that we will have another pandemic in the next decade or 20 years. , and of course, a different virus might behave differently, so we just need to be cautious about assuming that all viruses will behave like Covid. Encouragingly I think because of the very high efficacy of vaccines, they’re likely to confer some protection in immunosuppressed patients, which I think is great. We’ve learned that remote consultations can be effective. We’ve learned that all these measures, which we find rather burdensome like social distancing and hand washing and masks and remote consultations they are effective in reducing the transmission of common respiratory infections, and that’s definitely going to affect how we review people in future and how we hold those consultations. The use of technology is going to increase, I think exponentially the NHS has demonstrated it can move quickly if it needs to, but again, engagement with yourselves the patients and community services will be absolutely vital for that to work. And clinical research is a lifeline, and I just want to thank everyone, every patient out there and anyone else who’s listening who’s taken part in clinical research during this time. You have made a difference, and I’d really encourage you if you haven’t taken part, find something to take part in. If you want antibody testing go and find a test a study where they’re doing antibody testing. You can make a difference, and it’s we’ve shown that it’s the a really important way to develop our knowledge, the only way to develop our knowledge about management of important conditions. So thank you.

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