Voiceover
You're listening to the Talking Rheumatology Research podcast, brought to you by the British Society for Rheumatology.
Ernest Choy
Hello. I'm Ernest Choy, Editor-in-Chief of Rheumatology (Oxford) and I'd like to welcome all of you to this episode of Talking Rheumatology Research, live from the BSR. And joining me today is Dr Melanie Sloan from the University of Cambridge. Welcome and thank you for joining us, Melanie. You published a recent paper about neuropsychiatric lupus in the journal. Do you want to briefly tell us what that research was about and what were the main findings?
Melanie Sloan
Yes, thank you very much for inviting me today. So, our INSPIRE study, we were investigating the impact, the prevalence, the reporting of neuropsychiatric symptoms and the tricky topic of attribution to whether it's to the direct disease effect or other indirect causes or non-related causes. So we did a survey that was about 2,000 patients with systemic autoimmune rheumatic diseases. We had 400 clinicians and over 400 healthy controls. We got some quite concerning results - a very high prevalence of a lot of different neuropsychiatric symptoms, some of which have never been explored before, so we decided to start off from the patients' perspective. Our research is very patient-centred. Rather than following the ACR criteria, we said actually to the patients - we went on the groups – “What are the symptoms you're experiencing?” So, we started from there.
Ernest Choy
OK, so that that was great because obviously we want to have patients’ views and I was very impressed with the size of the study, with thousands of patients being involved in the study. I mean, one of the surprising findings is the level of disagreement between the healthcare professionals and the patients. What do you think drives that difference?
Melanie Sloan
I think a lot of it is communication - we have found that the patients... - and most of that then hinges on the fact that there's such little time. The clinicians are under such pressure; they have, sort of, 10 to 20 minutes. These patients have a multitude of diverse symptoms as we all know, and the clinicians and the patients are constantly prioritising which to report. And for various reasons that we're now looking into, the neuropsychiatric ones are sometimes not prioritised or actively avoided by clinicians and patients in discussing that.
Ernest Choy
Really? That's really interesting. So… so, why are they avoiding what would be very important? You would think that something that affects the brain would be very important. Why would they avoid it? And why would they attribute it differently?
Melanie Sloan
I think in terms of the avoidance, a lot of it – we… we found out that the doctors weren't actually – or the patients were reporting that they were never or rarely asked about mental health symptoms. So we had over 70% of patients said they've never or rarely been asked in all their years as a rheumatology patient about mental health, and over 50% said they've never or rarely reported their neuropsychiatric symptoms. So even extreme ones - we have almost 50% of lupus patients that had suicidal thoughts, hallucinations. I think we're looking into it now for both sides of the medical relationship. It was a fear of repercussions. The patients worry about the stigma, about their future disease symptoms being misattributed to mental health. The clinicians… again, it's time. If they have to deal with someone with suicidal thoughts, that's the whole day of patients who are then... will have their care affected. So I think the clinicians - it was really heartening, actually, I interviewed lots of different clinicians and they were very well-intentioned and really cared. They just didn't have the knowledge about… Because the patients aren't talking to the clinicians, they were thinking, “Oh, these are very rare”. And so we’re saying, actually, they're not rare. You just need to start talking about them.
Ernest Choy
So… so, do you think that the healthcare professionals, perhaps because they're rheumatologists and they're not trained in mental health, feel a little bit less confident in asking questions about it and dealing with that aspect of it? Do you think that's the… that underpins the difference amongst the healthcare professionals?
Melanie Sloan
I think, what we had also heard, so we had… 40% were rheumatologists; we also had neurologists and psychiatrists and some nurses. We didn't have enough nurses to statistically compare. There was a big difference; the psychiatrists and nurses tended to be much closer to the patients’ views, but then they have maybe an hour to discuss it, and they're obviously trained in that sort of eliciting. So there is, yeah, quite a big element of that and a lot of the rheumatologists were saying, “I just don't know how to talk about these symptoms,” or “There's not the resources to then deal with it”. I think with that, it's not just the NHS. We interviewed people all over the world, from Venezuela, Japan, North America, everyone’s saying, “When we find these problems, there's no resources to deal with it”. So I think we need to work a lot more with the charities and try and really help them because the level of distress was huge.
Ernest Choy
That's really helpful. You know, during the first day of the BSR during different sessions, we heard a lot about the different comorbidities in rheumatic diseases. So fibromyalgia is a common one and this is often associated with some of the distress and mental well-being. Do you think some of these attributions could be due to comorbid conditions in the patients?
Melanie Sloan
I think that's the tricky question, isn't it? We interviewed many, many doctors who all had often opposing views as to how much was directly attributable to the disease. I think, with so many of these symptoms, there's no blood test. I think with neuropsychiatric lupus it was… they said, sort of, between 70 to 80% of patients would have normal brain scans. So, you have no blood tests, no brain scans, how do you actually prove someone's having…? There’s nothing visible for the patient to actually say “This is my disease”. So, it's very, very tricky to attribute. And I think there's probably a lot of misattributions both ways.
Ernest Choy
One thing that I found rather surprising reading the paper was that response to treatment seems to be of very low priority, even in the interviews. I was very surprised by that. Why is that so?
Melanie Sloan
Um, I think it was reasonably high. I think it was fourth out of the 13. So, I think certainly the neurologists said that response to treatment doesn't help differentiate always between direct and indirect. So, for patients depressed because of their direct effect on their disease, then the immunosuppression will obviously help that. But also, if they're depressed because they've got very difficult lives and their pain gets better, then indirectly it affects it. So… and also they talked about placebo effect. But actually I think more surprising than the response to treatment one was the fact that asking patients their views on their disease activity was right at the bottom. Only 4% of clinicians put that as one of the top three and most put it right at the bottom. So, I think that was quite worrying and surprising because these patients - when you actually speak to them - I mean, it's nothing a rheumatologist could do… we had three hour long interviews where you sort of facilitate… and they're using the same types of evidence that the doctors are using: “Oh, do my neuropsychiatric symptoms get worse at the same time as I get a rash? Did it respond to steroids last time?” They're really working it out, even if they haven't necessarily thought through the processes. So, what we're really thinking, actually, is 'do we value patients' attribution views as well as just getting them to list their symptoms?' Obviously, they're going to be wrong sometimes, as the doctors are. But if we put all those pieces of evidence together, I think we're more likely to get nearer the reality.
Ernest Choy
So, your research has brought up many, many issues as we’ve discussed. What do you think are the top most important lessons we can learn and what are the most important steps forward if we were to try to address these issues?
Melanie Sloan
I think a whole part of why I started this research five years ago was to try and bridge that gap between patients and clinicians, because the clinicians are all well-intentioned and they want the best for us. When you go into being a clinician, they want the best for the patients, but there's often this mismatch of… sometimes the words the clinicians use, they don't necessarily realise the effect it has on a chronic disease patient. So, things like ‘patient denies depression’, it's something doctors… something older school doctors have been taught to write. Whereas as a patient that sort of feels like they're being accused of depression. So, there's quite simple things we could change.
And we found in our previous research, the ABCs, as we called it. So, doctors being available and accessible when the patients need them obviously was reduced due to COVID, through no fault of the doctors. Belief, I think is the biggest one, is patients feel disbelieved when they've got nothing visible, and I don't think many of them are going to be making it up. So, believing them, validating their symptoms even if there's no blood markers that show it, it's that belief. And continuity, so, the doctors have said they've got to know a patient so they can see the same progression of symptoms each time and step in. And rebuilding that trust, because a lot of patients have had horrible diagnostic journeys that they've taken many years to get the diagnosis and they've lost a lot of trust along the way. So, we really need to rebuild that trust with them.
Ernest Choy
So what are your plans for your future research after this study?
Melanie Sloan
Well, we want to extend the INSPIRE study because we've had so much interest internationally from clinicians and from patients. We had 300 emails to Cambridge saying, “This is the first time I’ve felt hope… you’re our voice”. And so, what we're looking at actually is whether neuropsychiatric symptoms can be a prodrome before the actual disease and before each flare so that we can catch it earlier if someone… So we had a patient who said, “Oh, I feel sort of manic and euphoric, and I know it's going to be a domino effect and I'm going to end up sectioned with psychosis from the lupus”. But actually, we can catch it there, if we can educate the clinicians and patients…
What I'd really like is every patient to write down their progression of symptoms and talk about it with the doctor and actually work out how we can act earlier. But also, we've seen such major problems with the heart breaking stories we've had of patients who say they don't want to be alive because… and this wasn't just one or two. I showed this to clinicians, some of the quotes, and they say “Oh have you just picked the worst?”. No, we had 2,000 surveys and long interviews where people are saying, “I don't want to live like this. I'm not me anymore”. So, I think what we all need to do is work to find some interventions because the NHS is really not going to be able to provide that. So, we've been looking at… we're doing an ADAPT study - how to help people adapt to having a chronic disease. So, we want to do courses. We've just done a really successful study where we've… a randomised control trial where we've sent some off to the Wren listening, which is a really good new organisation that's helping people with autoimmune diseases. We've given some text and videos, and we've given some an exercise class. So, just anything that we can do to help. So, when you get diagnosed with cancer there’s a whole support group. Even when you have a baby, when you're pregnant, everything's there for you, everything's in place. But I think with rheumatic diseases, we're still missing that.
Our other study - what, obviously, we talked about earlier, is that we want to improve that patient-clinician communication. So, we're looking at giving patients a pre-appointment checklist for those things that are really embarrassing or difficult to talk about so they can put it on paper and say, “This is what I want to discuss today, this is what I need in my letter to feel validated”, and then improve - get the clinicians to be taught by the psychiatrist how to elicit those tricky symptoms. So hopefully then we can improve the medical relationship, we can improve the care that we can provide for them, sort of, externally to the rheumatology appointment, and then we can look more in depth at the, sort of, biomarkers, immunological… I’m more the soft side so team clinicians will look at the harder science.
Ernest Choy
OK, that's a wonderful message to end this podcast. Thank you very much for your time and good luck with your future research.
Melanie Sloan
Thanks so much.
Voiceover
Thank you for listening to Talking Rheumatology Research, brought to you by BSR. Please do rate, share and subscribe through your favourite podcast app.
You're listening to the Talking Rheumatology Research podcast, brought to you by the British Society for Rheumatology.
Ernest Choy
Hello. I'm Ernest Choy, Editor-in-Chief of Rheumatology (Oxford) and I'd like to welcome all of you to this episode of Talking Rheumatology Research, live from the BSR. And joining me today is Dr Melanie Sloan from the University of Cambridge. Welcome and thank you for joining us, Melanie. You published a recent paper about neuropsychiatric lupus in the journal. Do you want to briefly tell us what that research was about and what were the main findings?
Melanie Sloan
Yes, thank you very much for inviting me today. So, our INSPIRE study, we were investigating the impact, the prevalence, the reporting of neuropsychiatric symptoms and the tricky topic of attribution to whether it's to the direct disease effect or other indirect causes or non-related causes. So we did a survey that was about 2,000 patients with systemic autoimmune rheumatic diseases. We had 400 clinicians and over 400 healthy controls. We got some quite concerning results - a very high prevalence of a lot of different neuropsychiatric symptoms, some of which have never been explored before, so we decided to start off from the patients' perspective. Our research is very patient-centred. Rather than following the ACR criteria, we said actually to the patients - we went on the groups – “What are the symptoms you're experiencing?” So, we started from there.
Ernest Choy
OK, so that that was great because obviously we want to have patients’ views and I was very impressed with the size of the study, with thousands of patients being involved in the study. I mean, one of the surprising findings is the level of disagreement between the healthcare professionals and the patients. What do you think drives that difference?
Melanie Sloan
I think a lot of it is communication - we have found that the patients... - and most of that then hinges on the fact that there's such little time. The clinicians are under such pressure; they have, sort of, 10 to 20 minutes. These patients have a multitude of diverse symptoms as we all know, and the clinicians and the patients are constantly prioritising which to report. And for various reasons that we're now looking into, the neuropsychiatric ones are sometimes not prioritised or actively avoided by clinicians and patients in discussing that.
Ernest Choy
Really? That's really interesting. So… so, why are they avoiding what would be very important? You would think that something that affects the brain would be very important. Why would they avoid it? And why would they attribute it differently?
Melanie Sloan
I think in terms of the avoidance, a lot of it – we… we found out that the doctors weren't actually – or the patients were reporting that they were never or rarely asked about mental health symptoms. So we had over 70% of patients said they've never or rarely been asked in all their years as a rheumatology patient about mental health, and over 50% said they've never or rarely reported their neuropsychiatric symptoms. So even extreme ones - we have almost 50% of lupus patients that had suicidal thoughts, hallucinations. I think we're looking into it now for both sides of the medical relationship. It was a fear of repercussions. The patients worry about the stigma, about their future disease symptoms being misattributed to mental health. The clinicians… again, it's time. If they have to deal with someone with suicidal thoughts, that's the whole day of patients who are then... will have their care affected. So I think the clinicians - it was really heartening, actually, I interviewed lots of different clinicians and they were very well-intentioned and really cared. They just didn't have the knowledge about… Because the patients aren't talking to the clinicians, they were thinking, “Oh, these are very rare”. And so we’re saying, actually, they're not rare. You just need to start talking about them.
Ernest Choy
So… so, do you think that the healthcare professionals, perhaps because they're rheumatologists and they're not trained in mental health, feel a little bit less confident in asking questions about it and dealing with that aspect of it? Do you think that's the… that underpins the difference amongst the healthcare professionals?
Melanie Sloan
I think, what we had also heard, so we had… 40% were rheumatologists; we also had neurologists and psychiatrists and some nurses. We didn't have enough nurses to statistically compare. There was a big difference; the psychiatrists and nurses tended to be much closer to the patients’ views, but then they have maybe an hour to discuss it, and they're obviously trained in that sort of eliciting. So there is, yeah, quite a big element of that and a lot of the rheumatologists were saying, “I just don't know how to talk about these symptoms,” or “There's not the resources to then deal with it”. I think with that, it's not just the NHS. We interviewed people all over the world, from Venezuela, Japan, North America, everyone’s saying, “When we find these problems, there's no resources to deal with it”. So I think we need to work a lot more with the charities and try and really help them because the level of distress was huge.
Ernest Choy
That's really helpful. You know, during the first day of the BSR during different sessions, we heard a lot about the different comorbidities in rheumatic diseases. So fibromyalgia is a common one and this is often associated with some of the distress and mental well-being. Do you think some of these attributions could be due to comorbid conditions in the patients?
Melanie Sloan
I think that's the tricky question, isn't it? We interviewed many, many doctors who all had often opposing views as to how much was directly attributable to the disease. I think, with so many of these symptoms, there's no blood test. I think with neuropsychiatric lupus it was… they said, sort of, between 70 to 80% of patients would have normal brain scans. So, you have no blood tests, no brain scans, how do you actually prove someone's having…? There’s nothing visible for the patient to actually say “This is my disease”. So, it's very, very tricky to attribute. And I think there's probably a lot of misattributions both ways.
Ernest Choy
One thing that I found rather surprising reading the paper was that response to treatment seems to be of very low priority, even in the interviews. I was very surprised by that. Why is that so?
Melanie Sloan
Um, I think it was reasonably high. I think it was fourth out of the 13. So, I think certainly the neurologists said that response to treatment doesn't help differentiate always between direct and indirect. So, for patients depressed because of their direct effect on their disease, then the immunosuppression will obviously help that. But also, if they're depressed because they've got very difficult lives and their pain gets better, then indirectly it affects it. So… and also they talked about placebo effect. But actually I think more surprising than the response to treatment one was the fact that asking patients their views on their disease activity was right at the bottom. Only 4% of clinicians put that as one of the top three and most put it right at the bottom. So, I think that was quite worrying and surprising because these patients - when you actually speak to them - I mean, it's nothing a rheumatologist could do… we had three hour long interviews where you sort of facilitate… and they're using the same types of evidence that the doctors are using: “Oh, do my neuropsychiatric symptoms get worse at the same time as I get a rash? Did it respond to steroids last time?” They're really working it out, even if they haven't necessarily thought through the processes. So, what we're really thinking, actually, is 'do we value patients' attribution views as well as just getting them to list their symptoms?' Obviously, they're going to be wrong sometimes, as the doctors are. But if we put all those pieces of evidence together, I think we're more likely to get nearer the reality.
Ernest Choy
So, your research has brought up many, many issues as we’ve discussed. What do you think are the top most important lessons we can learn and what are the most important steps forward if we were to try to address these issues?
Melanie Sloan
I think a whole part of why I started this research five years ago was to try and bridge that gap between patients and clinicians, because the clinicians are all well-intentioned and they want the best for us. When you go into being a clinician, they want the best for the patients, but there's often this mismatch of… sometimes the words the clinicians use, they don't necessarily realise the effect it has on a chronic disease patient. So, things like ‘patient denies depression’, it's something doctors… something older school doctors have been taught to write. Whereas as a patient that sort of feels like they're being accused of depression. So, there's quite simple things we could change.
And we found in our previous research, the ABCs, as we called it. So, doctors being available and accessible when the patients need them obviously was reduced due to COVID, through no fault of the doctors. Belief, I think is the biggest one, is patients feel disbelieved when they've got nothing visible, and I don't think many of them are going to be making it up. So, believing them, validating their symptoms even if there's no blood markers that show it, it's that belief. And continuity, so, the doctors have said they've got to know a patient so they can see the same progression of symptoms each time and step in. And rebuilding that trust, because a lot of patients have had horrible diagnostic journeys that they've taken many years to get the diagnosis and they've lost a lot of trust along the way. So, we really need to rebuild that trust with them.
Ernest Choy
So what are your plans for your future research after this study?
Melanie Sloan
Well, we want to extend the INSPIRE study because we've had so much interest internationally from clinicians and from patients. We had 300 emails to Cambridge saying, “This is the first time I’ve felt hope… you’re our voice”. And so, what we're looking at actually is whether neuropsychiatric symptoms can be a prodrome before the actual disease and before each flare so that we can catch it earlier if someone… So we had a patient who said, “Oh, I feel sort of manic and euphoric, and I know it's going to be a domino effect and I'm going to end up sectioned with psychosis from the lupus”. But actually, we can catch it there, if we can educate the clinicians and patients…
What I'd really like is every patient to write down their progression of symptoms and talk about it with the doctor and actually work out how we can act earlier. But also, we've seen such major problems with the heart breaking stories we've had of patients who say they don't want to be alive because… and this wasn't just one or two. I showed this to clinicians, some of the quotes, and they say “Oh have you just picked the worst?”. No, we had 2,000 surveys and long interviews where people are saying, “I don't want to live like this. I'm not me anymore”. So, I think what we all need to do is work to find some interventions because the NHS is really not going to be able to provide that. So, we've been looking at… we're doing an ADAPT study - how to help people adapt to having a chronic disease. So, we want to do courses. We've just done a really successful study where we've… a randomised control trial where we've sent some off to the Wren listening, which is a really good new organisation that's helping people with autoimmune diseases. We've given some text and videos, and we've given some an exercise class. So, just anything that we can do to help. So, when you get diagnosed with cancer there’s a whole support group. Even when you have a baby, when you're pregnant, everything's there for you, everything's in place. But I think with rheumatic diseases, we're still missing that.
Our other study - what, obviously, we talked about earlier, is that we want to improve that patient-clinician communication. So, we're looking at giving patients a pre-appointment checklist for those things that are really embarrassing or difficult to talk about so they can put it on paper and say, “This is what I want to discuss today, this is what I need in my letter to feel validated”, and then improve - get the clinicians to be taught by the psychiatrist how to elicit those tricky symptoms. So hopefully then we can improve the medical relationship, we can improve the care that we can provide for them, sort of, externally to the rheumatology appointment, and then we can look more in depth at the, sort of, biomarkers, immunological… I’m more the soft side so team clinicians will look at the harder science.
Ernest Choy
OK, that's a wonderful message to end this podcast. Thank you very much for your time and good luck with your future research.
Melanie Sloan
Thanks so much.
Voiceover
Thank you for listening to Talking Rheumatology Research, brought to you by BSR. Please do rate, share and subscribe through your favourite podcast app.
