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To be talking about updates from her recent research and interviews on pots experiences from people with pots and healthcare professionals. Thank you. Thank you very much Leslie. Um So I, I'm very pleased to be um presenting here today. Um And there's two different things I'm gonna present and talk about. Um And the overall aim I suppose to say to people is that when you go out there looking for evidence for your clinical practice, you're probably not gonna find it. And in fact that we have a duty that if we're seen and we have an interest in this, that actually we ourselves help produce that evidence, you know, and we've got a small group of us here say we've got more people online. And so hopefully this will give you a little impetus to say, you know, it doesn't have to be the gold standard RCT with thousands of people in different arms um to be published. Um And the to help improve the overall profile of a lot of things that we've talked about. Um So what I'm gonna talk about is first, I'm gonna share um an evidence mapping that I did. Um a couple of years, um, a few years back and then I'm gonna talk a bit about the experiences of the interview. So I hope that a lot of this will help bring together some elements of what we've, some of what we've already talked about really? Um And I think some of it when you look at it's actually quite shocking really. So, um, the first thing is, um, oh, I haven't done both of them together. The first thing is a, is a number of years ago. Um I did a mapping of the evidence base in pots. So II was doing a master's, I wanted to show you were doing a systematic review. I was thinking, right, what am I gonna do a systematic review on? And then when you just googled in postural orthostatic tachycardia syndrome, you come up with about 600 results and you think, well, that's just map, but it ended up being an evidence map ie mapping what was already out there in terms of the evidence. And I think one thing we need to think about is that pots itself um wasn't really recognized until 1993 which was when the first diagnostic criteria came out. Um And really probably didn't even start to gain ground if you talk to some of the, you know, older professors that were like the gurus in this area, you're probably talking about the early two thousands. Um when you first started getting, you know, even the national experts sort of recognize in a man imaging um pots and orthostatic intolerance syndromes. And so it's quite, you know, it quite goes to reason that you've, that you've got this, you know, diagnostic criteria or this recognition of a, of a condition, then you've got some experts recognizing it and then that starts filtering down to more and more people. So the evidence base starts to gain ground as you go through. So even though I haven't recently evidence mapped, but I can talk about some um results that I've got from a systematic review that I'm doing at the minute. As you can actually see in recent years, things are gaining more ground. And so um we'll have a look. So if you look at the evidence mapping is basically the vast majority of research is around biomedical stuff. They do a lot of things like tilting people and taking lots of blood tests, things like that. The non pharmacological management accounts for um a small proportion of the research and things around comorbidities. Like we've talked a bit, we talked in our nurses session this morning about, you know, potential mast cell activation disorder and hyper mobile Danlos syndrome. Actually, these are very poorly reported on in research studies. So actually, we don't know what patients are being treated with what and how successful things are. And even the research that is looking at the co morbidities of those coexisting is really poor. There's probably only about 34 research studies out there that look at that and they're not well founded. So you've got a total of observational studies where people have, like looked at data that they've like had in clinic that might be saying, me or mel going through or Nicky going through and through the notes of the people were saying and just collecting that data and just publishing it and the actual experimental studies when you're looking at, you know what sort of treatment? Oh OK. All right. So then when you look through at the experimental studies, you're only looking at 56 studies in 2016 where you actually did something like you took a group of people with pots and you put them on something like propranolol and the propranolol work or you took them on. In fact, Aberdeen has only more recently got into the literature. Um It was very sporadic um up until um more recent years. But you know, tho those are, those are very small experimental numbers of experimental studies when you think about evidence base for the types of treatments that we deliver and what we do for, for patient groups. So the other thing that um the evidence oops, sorry, I haven't. Here we go. So the other thing that the evidence mapping showed was that there had been as you saw the increase in diagnostic rate of parts, then you saw increasing amounts of publications. So a lot of these sample sizes that they used in studies were extremely small. So 27 studies had a sample size that was greater than 100 4 of which had an intervention. So most of these were observational studies and surveys, things like that, there was a limited control of variables so often they wouldn't control for things like fluids. We've talked a little bit about hydration is so important. So often a lot of these studies didn't really control for elements of hydration in people, they didn't control for other lifestyle measures. Um And that most of the studies, 98 studies only took measurements over one day. So traditionally, what they did was they brought somebody in, they put them on a tilt table test, then they did an intervention, then they re tilted them and then wrote up whatever the results were. And there were only 16 studies that did anything over one week. And if you think of things like when you look at say cardiac rehabilitation programs, you're often looking at 12 weeks, 16 weeks, six months later, you know, you're looking at long periods of times that people are receiving treatments. But in fact, in a lot of these studies, these measurements were a very short period of time. And in a lot of studies, what they actually used was subjective measurements. We just mentioned there was a question earlier about the patient reported outcome measures. And I think when you look at the patient reported outcome measures. Um There's a whole science around it and around doing it properly. So, in a lot of studies, they've, they, they haven't noticed that proper science, like you would sort of like put out lots of, lots of questionnaires. What do you think is important? You do that with healthcare professionals and people with a condition, then you would go for like a Delphi process where you will do like a sort of a voting process and like wheedle all the initial concepts down to maybe I don't know, 10 or 12 that should be measured within a, within a patient reported outcome measure. And so you have actually seen a lot of the subjective ones is they do things like they look through notes of patients over the past 10 years and then gather up what symptoms are written in the notes and you know how sometimes they can be quite poorly reported in notes and documented in notes. Um and then like develop a questionnaire based on that. Um So, um and the validation is very questionable with some of the some of the outcome measures as well. So then a lot of these types of outcome measures are then used in terms of subjective measurements in the studies. So, and in a couple of the studies, people just sat down a couple of people and said, what, what are the sort of questions that we think we should ask somebody on a tilt table? Test. And I think we should ask them these five questions. Let's just ask them this, which is actually not a very scientific or robust method in terms of um in terms of taking measurements, it's based on those measurements that then they're coming back and saying, while we find that this cognitive assessment in people on tilts has shown that um um whatever measure, whether it was fluid or um anything else was, wasn't very effective. And there's a very good example recently and I, I'll share that with you. Um The other important thing is around where the research is coming from. So a lot of the research tends to come from North America. So you're looking at the Canadian teams and the North American teams. So you've got on that on the top table where it says country research team, 100 and 43 studies at that time came from North America. So the European teams were about 24 teams, 16 publications came from the UK. Um And so there were very few in, in other areas. And then if you look at the author teams, you see that a huge number of teams have the same group of authors, which in many respects, you know, people like Blair Grubb has been around for many, many years and is a, is an international expert in this area as same as Satish low, um sorry, Satish um Satish ras. So then you actually see that you know, they're, they're on a number of papers, but actually, then it becomes questionable about, you know, how, if those results are reproducible in other settings like our settings in the UK, um or whether they're only reproducible in the settings in Canada. So I think one of the things I wanted to share was around, oops, keep forgetting this. So is around some of the, one of the things that I've updated so recently, what I've been doing is um I'm doing a systematic review and looking at the non pharmacological interventions in pots and see what the studies are like out there. And actually some of it's a bit shocking when you think about him. So we advise fluid and we advise the fluid intake and there's only four studies out there that look at fluid intake. What they actually do is they put people on a tilt table test, they tilt them, then they give them one pint of water and they re tilt them and they said to improve pot symptoms. And there's literature on the orthostatic intolerance groups that look at um the, the fluid um and fluid intake. But, you know, having a robust study around fluids is quite, you know, and we, you know, we say 2.5 to 3 L, but actually, we haven't got an evidence base that says that and we haven't got an evidence base that says, you know, what, how do people adhere to this over the long term because this is just on one day and a lot of people have gastrointestinal issues that mean sometimes keeping that fluid down on being able to manage that volume of fluid is quite difficult. There is um three dietary studies out there in pots. One of them looks at salt intake and having a high salt intake and that's effective. One study looks at gluten and one study looks at the effect of food intake and with the food intake, like we know that we often tell people to have small amounts of um refined carbohydrates. Um you know, things like pasta and rice and the amount of fluid absorption internally. Um But actually, if you think that we are asking people to take and we say up to 10 g if you haven't got hypertension or, or, or kidney disease. Um and we're basing that on one study with that and we don't really know the long term effect effect of that on people. There's a lot of guidelines and it can seem quite counterintuitive to a lot of people with um parts because you know, to be told when all the national messages is around no salt and low salt diets to be told to have high salt doesn't feel quite right. And you find a lot of people I know in clinic, a lot of people ask us around the guidelines on that. So there's there is poor evidence around the non pharmacological, the compression studies are a little bit better. But actually compression in clinical practice is if there's one thing, people, people get the fluids and the salt message but they don't get, often get the compression message. Um And compression studies again, you're looking at um small numbers of studies, but there is one recently that has shown that shorts are apparently just as good as long as leggings or, you know, full length compression. The exercise studies, I think we're having a talk about exercise after, um, this talk. But again, the exercise studies is the one with the best evidence base. But sometimes when you look through the studies, you actually wonder whether what they've done is they've actually taken out the people with the worst end of the symptoms. People that have say how mobile Danlos syndrome because they, so for instance, in one of the big studies, they initially approached something like 260 people, then about 100 and only about 100 and 50 go into the, into the trial. I can't remember the exact numbers, but it's something like this. And because a lot of people said, actually, we don't think we can manage this because they did things like ask people to stop the medications prior to coming in or they already had to have a high level of exercise. And if you think some people want, you know, a lot of people when we see in clinic, they can't manage without their medications and actually they're not able to engage in high levels of exercise to begin with. They need to gradually build that up. Um, and then throughout that, throughout that exercise program, about half of the people dropped down and there's not clear reasons and we don't know who are the people that dropped out. It could be people with things like hypermobile Danlos syndrome because, you know, people, people with, um, heads could be the people that are more fatigued, more tired, um, generally don't manage the exercise as well and then just feel that they can't cope with it and have dropped out of the studies because nobody reports on the comorbidities. We don't actually really know how effective the exercise strategies that are out there. Um, really are, um, there's one dysfunctional breathing study, um which is quite good. Actually, that's by, um Charles Riley in London. Um And there's one study on body positions and cognitive brought people in with pots, they tilt tables on four times, a tilt table four times on one day. I was talking about this this morning and then they re tilted them the next day and asked them to build and asked them to fill in 45 cognitive questionnaires. And then their conclusion was that actually do encounter maneuvers wasn't effective and didn't improve cognitive capacity. But actually people were saying, and, and when you speak to people that have pots and have had tilt table tests I'll actually say cognitively if they can't think very well after the tilt table they feel quite out of it. So, actually being repeatedly tilted and then asked us to fill in these cognitive questionnaires is, um, quite dubious. Um, and I think the main message for all of this to go away is, is actually we can do a lot better than that, I'm sure. Oh, international calls as well around the research. So there's a lot more, there's, there are no international trials though, I think, I think there might be some ongoing between Sweden and and Canada. But um oh, but there is um nothing we need data that are on tracking diagnoses of pots and the impact of the illness. We need to improve physicians awareness and to understand multiple path of physiolog and how those impact on pots and pots subtypes better and effective treatments. Um And we need collaborative research really and also funding bodies to recognize pots and to fund studies into parts. So some of the bigger funding organizations like mrc hearing people. So these were in depth interviews between lasting between about 45 minutes to an hour and a half. Um And there were 19 people that had pots that are recruited from the interviews from three centers in the UK. So with a confirmed diagnosis of pots. So I have to thank the um participation centers for that very much. So, um and you can see that there are 17 women with lag pots is a predominantly female female condition and from a widespread across the country. So from the northwest, the northeast and the southeast, um I also interviewed 25 health care practitioners with using snowball sampling. So that's when you sort of, you know, you ask somebody when you're interviewing them, can you think of anybody else you think would be important to interview and that they might say, oh, why don't you contact? So and so and pass on that information. So that sample when you break it down, had consultants, cardiologists and nurses and A HPS 14 general practitioners. And again, a wide geographical spread from the very north of England down to the south. And four of these healthcare practitioners also had a personal experience of pos. So um I use something called thematic analysis to look at this and I'll go through each theme in a little bit more details, but I think it tells quite an interesting narrative and story of parts. This is one narrative. Um But I think it does when you think when we talked, we talked about the experiences here in the room. It very much is in keeping with a lot of what people have said. So the four themes are what's is a challenging condition services by accident and not and not design few and far between validating experiences and practical self help and a hand to get going. So in the first theme, pots is a challenging condition. Um Most people with pots, their condition is quite challenging, not the person, the condition is quite challenging. And for that, it presents a big challenge. I think that's quite an important quote to remember because sometimes in clinical practice, people say these people with pots are really challenging and they really personalize that. But actually, it's not that that person is challenging. It's more of the condition, our understanding and their experiences that are challenging. And most people interviewed the had parts talked about the life, the life changing nature of, oh, sorry, I moved on and talked about the life changing nature of pots. And that pots was quite, um you know, had a significant impact on almost all most domains of life from um ability to work, participate in work, socialize. Um and um daily symptoms that could often have a significant impact on people. Um People spoke and a huge theme that came out and we've spoken about is the dismissals characterized as brushing me off and that was a huge experience for a lot of people. Um They're quote in blue. Um II won't read every single detail out, but I'll read some of the, the the most salient points. So if I call out the elephant, elephant in the room, what I see is a lot of people come across as very complex, confrontational resistant. They've been repeatedly traumatized, feeling desperate and poorly and they've repeatedly been told there's nothing wrong with them and they should get back to work or they're letting their family down or something as invalidating as I expect. It's because you're in your thirties and you haven't had Children. And this, this, this was not exceptional. There were some quite vociferous um and quite emotional discussions people had around their experiences and different things, healthcare professionals had said in dismissing them in dismissing them and sometimes over years and as a result of the dismissals, what you have, what you found was that then that had an impact on the social networks. It had an impact on school, not believing the person and being quite dismissive of them and saying, you know, it's just because you're lazy and in fact, people believing they were lazy was quite a, a huge theme for a lot of people. Um it had a huge impact on family and friends because a lot of people thought people were making it up in the head, they must be mad. And that comes on to the psychological matters, which I think Sam quite nicely talked about is that um a lot of people have been labeled with anxiety. And what they actually said is I can understand now the difference between my pot symptoms and anxiety. I know the difference and I didn't start out being anxious. But actually because of my experiences of dismissals and some of them actually talked about being traumatized um by those experiences. But because of that they now are anxious. So they're anxious every time they go to the doctor because they're just wondering who's gonna believe me. Now, do they still think I'm mad or do they, are they, are they actually gonna do something? Um And so one of the quotes, do I think patients with pots are more anxious than the general population? No. But does anxiety sound like pods? Yes. Lots of patients are labeled anxious. Um And there's a lot of anxiety associated with it, but it's not the cause and I think that's something really important to take away. Um People talked about the current medical model and the type of medical model that we have at the minute one that works through compartmentalizing or boxing things. So the first way we have that is the way we commission services and the way GPS work. So a lot of GPS work to tick boxes, which is a very black and white way of working. Whereas when you're looking at pots and this autonomous, oh, I've only got five minutes, right? OK. So I'll hurry up. Um So a lot, a lot of people talked about the medical model really isn't fit for the way we actually um um the way you can actually look after pots and access to health care can be extremely difficult for a lot of people with pots. I won't read out all the quotes because you can have a look as I'm talking the second thing was a was services by accident and not design and feeling very far between. A lot of people talked, oh, sorry. A lot of people talked about jumping through diagnostic hoops that is going through lots of diagnosis, misdiagnosis, normal testing. Thinking well, if II feel so rubbish, I don't think I was mad but I must be mad now because everything's coming back normal because they were having lots and lots of repeated tests and investigations. And as a result of this diagnostic pathway or lack of diagnostic pathway, what they ended up doing was a lot of them had originally gone into private health care to actually pay for getting their diagnosis. Um And one of the issues that came out, some of the clinicians, um and some of the ones in people in primary care weren't found this very difficult because they thought that what people were often paying a lot of money to go into health, go into the private sector. And second of all this, that didn't always mean that the local clinicians followed through on care plans in terms of what were set up within private clinicians. And that raised a whole question about who is responsible even when people had a diagnosis of pots who was ultimately responsible for the ongoing care and management of pots. And there was a lot of back and phone. People shared stories between primary care and secondary care and a couple of scary ones. And one of the quotes there is around somebody who started to develop different symptoms and knew exactly that they were different to their pot symptoms and pretty much said that to everyone they met and everyone said you just don't, you know, you just don't know what you're talking about. These are pot symptoms and in fact, what happened was she had a different diagnosis of something else and some of the clinicians raise this, that they've got a lot of people writing to them saying, how do you do this? How do you do that was actually sometimes they were really worried about the fact that people would be missing other diagnosis on the basis of not understanding pots and labeling every symptom somebody presents with as that must be your pots symptoms. Um And basically what we need is better knowledge and awareness and opening up conversations about pots and clinical care. So the third theme was around validating experiences and most people, what was really, really key was a validation and what was really important to human interaction. So healthcare practitioners that understood parts and saw a lot of people with parts spent time to develop relationships and have good communication and relationships with people. You can't underestimate for a lot of people from their experiences having of the diagnosis. And somebody that a actually sat down and listened to them was an extremely validating experience for healthcare practitioners. And I think this is really important for us in this room is that a lot of people just learned on the job, they didn't have training, they didn't have, you know, a, you know, experience that just that they just ended up by accident, they had a mentor or they took an interest in parts and then they inspired others to take up um to take up looking after parts. Um And a lot of people just use their clinical reasoning skills. They didn't actually look at guidelines which they found quite disconcerting and really impacted often a lot of self confidence in terms of whether they were clinically managing people properly. So a lot of this was described as sort of like being working, being a bit of a mishmash and everything for people as well with parts. They thought it was really important to interconnect them and rein interconnect that relationship between their mind and body. And a lot of them used heart rate monitors, healthcare practitioners weren't very keen on them, but the people with parts, some people found them really, if they didn't hypervigilant, found them really beneficial. Um And then I think one of the one thing is the other thing I, one of the last sub themes in validating experiences is the importance of movement and resting. Because a lot of people are always told you need to exercise, you need to do this, you need to do that, you need to do the rest of it. But having meaningful rest was actually very difficult for people to engage in and most people found, oops, sorry. Um And the final theme is practical, self help and a hand to get going. So we all talk about self management and self. Most of us say if we have a condition, we would say we manage that ourselves, that we self manage. But actually, most of us may have had a helping hand to get a lot to go along the way. And for a lot of people with pots, they were just kind of left and limber. They had the diagnosis and they were like, they were, they often felt that they didn't get that at the helping hand for instance, that you might get with diabetes. So one person talked about the support their daughter got, who had the diabetics diagnosis, they had support groups, they had a nurse that came out, they got all sorts of information, um and some of some other conditions as well. Whereas with this, you were kind of given a diagnosis and you didn't have access to the same support as you would with other conditions. As a result. A lot of people went onto the internet and became keyboard warriors. And they were essentially, although there were lots of different experiences, a lot of people thought they were holding each other up rather than necessarily being, um, very, um, sort of gaslighting each other or anything like that. Um, and a lot of people had to learn sort of different tools and techniques and um to get themselves moving forward. Um, and research, as I've mentioned before, we're just really dipping our toes in the water. Somebody said there's a lot of research to be done out there, we really don't areas to work on. So really, I suppose in my closing closing remarks, I think that that would be the main message really to come across. There's a lot more things that we need to do. Ok. Well, thank you very much, Helen. That was a fantastic talk.