Episode Transcript
Jill Brook: [00:00:00] Hello, fellow POTS patients, and beautiful people who care about POTS patients. I'm Jill Brook, your hyperadrenergic host, and we are so lucky to have back with us today, Dr. Marie-Claire Seeley, and she's gonna talk about her POTS registry and her latest published research findings. You may recall that Dr.
Seeley is a clinical nurse who works with POTS patients. She's a postdoctoral fellow and researcher at the University of Adelaide. She's the founder and director of the Australian POTS Foundation. She does so much to help POTS patients get answers and awareness faster. Dr. Seeley, thank you so much for being here.
Marie-Claire Seeley: Oh, it's always great to be here talking to you, Jill, especially about our research. So thanks for having us back on.
Jill Brook: Well, I love how quickly you churn out the research. Your latest one comes from your POTS registry, and I realized that when we talked last time, we mentioned your POTS registry, but we didn't say what it was. Do you want a quick say what that even is?
Marie-Claire Seeley: Yeah, yeah, sure. So a patient registry is [00:01:00] when clinicians and researchers get together and they essentially enroll people with a certain condition, and you can have patient registries about hip replacements, so anyone who has a hip replacement can go onto that registry. And what it does is help clinicians and researchers to track what happens to patients with certain conditions.
And for instance, in hip replacement registries, it would give some indication of what type of surgery or what type of replacement has better outcomes over time. And the reason that registries are important is because ICD codes or the International Classification of Disease codes are not always available for certain conditions and certainly for POTS
we haven't had one ever. But in America you had got one put in, in, in 2022, and here in Australia we've got one coming in this year. But in the absence of that, nobody's collecting data on certain conditions, [00:02:00] so the way to combat that is to set up a patient registry. And so here in Adelaide, South Australia, there's no public clinics for POTS really in Australia. People with POTS can go to any hospital, but they're unlikely to get specialized POTS treatment and they're actually more likely just to be kind of turned away 'cause they don't have a life threatening condition.
And so we've had to set up a registry in a private medical practice, and this is probably the biggest POTS practice in Australia. We have about 2000 patients who have come through looking for a diagnosis in terms of having clinical features of, of POTS, and about 70% that actually come to us diagnosed with POTS.
And that's because their GPs are sending them to us thinking that it is POTS in the first place. And so we've, we started a registry as part of my PhD work, and in that we collected information both about [00:03:00] their clinical diagnosis. So we get to, to look at all their medical records, have a look at what conditions they have, what medications they're on.
But we also put out a whole bunch of surveys to these people when they join the registry. And those surveys look at their diagnostic journey, but also things like their quality of life, their symptoms across various different conditions, so like their autonomic symptoms and their fatigue and their anxiety and depression symptoms.
And so we did a big study where we went back and looked at 500 of these patients. So essentially the first 500 that came through. And we wanted to really detail what does it look like for these people. And this particular paper that has just been accepted for publication will come out in an international cardiovascular nursing journal.
Really wanted to [00:04:00] look at what are the differences between females and males in our registry. So we've termed it sex, biological sex discrepancies essentially. And so we wanted to detail are there significant differences in their diagnostic journey, but also their symptoms and their outcomes.
And we did have a little bit of information about that previously. So there was that big POTS study done by Dysautonomia International and a whole group of researchers that showed a really large group of people, I think it was over 4,000 people. And these were people from all around the world. And in that they did notice that,
that women were more likely to be told that they had anxiety than men, but that was a more broad survey. It was also self-reported. So we, we don't have a lot of clinical data to support that. So this study really looks essentially what are the differences between men and female [00:05:00] with POTS? And there were some several, several really crucial outcomes of this study.
So firstly, what were the similarities? Well, we found that essentially men and women had the same age of onset. So typically the average time, average age in our group was about 22 years of age. Understanding that this is essentially an adult population. So it was people from 16 years old could be in the registry, but still they could look back and say, when did my symptoms first start?
And mostly their symptoms did start around that late adolescence to early adulthood, which is probably different to what a lot of clinicians think. They all think of the 13-year-old girl with POTS, but actually a lot of people get POTS in their adult years. We also found contrary to a lot of opinion out there that, that women and men attended
as many doctors as each other. [00:06:00] So they sought as much help from multiple doctors. So on average they see about five doctors before they get a diagnosis. Both men and women. And they went to the emergency department as frequently as each other. And there's been in the past some suggestion in other sex discrepancies, in other conditions that women seek
help differently than men. Men don't go and seek help, and that's why women, you know, they might see more doctors or they might express their symptoms far more than men. And there's this general thought that men don't express their symptoms and don't see doctors. We didn't find that in this cohort. So definitely they, they went as frequently to the doctor as each other.
They went to emergency department as many times as each other. So over 50% of the population had been to emergency department with their symptoms prior to diagnosis, on average five times, and still did not [00:07:00] receive a diagnosis. Now in terms of do they express their symptoms differently, there is a general
consensus or thought that has been put forward in, in previous publications that women are more likely to express symptoms. Well, what we found was that women had worse autonomic symptoms, so they, their own self-report was that across the board, everything autonomically, so that's things like sweat dysfunction, pupilary dysfunction, what we call vasomotor.
So those changes in colors in your legs that you get, even the tachycardia and the orthostatic intolerance, that was all worse in females than it was in men. So definitely they, they were saying our symptoms are worse in, in autonomic function, but they did not have differences in their self-reported anxiety, in their self-reported depression or [00:08:00] in their self-reported fatigue.
So they don't universally express symptoms worse than men. Just certain symptoms were expressed worse than men. And interestingly, despite having worse autonomic symptoms, they did not have worse anxiety or worse fatigue. So that was really important for us to understand. So those two factors that we've previously been told, you know, that women seek more help more often wasn't true, and that they universally express symptoms worse than men is also not true.
And then the other thing was that they, despite having worse autonomic symptoms, they pretty much regarded their quality of life, so that's a self-reported measure of how bad or how much dysfunction they have with mobility, with self-care, with usual activities, with pain, with anxiety was basically the same as the men.
[00:09:00] So worse symptoms, autonomically, same fatigue, same anxiety, same depression, same quality of life. So that was really, you know, very important to us because what does that tell us then? Well then we get to the next section is, so how much differences do they experience in terms of their diagnostic journey?
And previously we've seen that it's delayed in women, but in our group it was worse than anything that has been recorded internationally. So for women it was seven years diagnostic delay, and for men four years. And that really marked diagnostic delay. And that is including the fact that we have quite a few long COVID patients at our clinic who typically are diagnosed quicker than the average POTS patient because of the awareness around long COVID.
So even with that population in there, this is a really extended diagnostic delay [00:10:00] compared to what we've seen in North America and in England which are the two other big studies that have been done around this. So despite going to the emergency department the same amount of times, despite seeing as many doctors prior to diagnosis, despite having worse autonomic specific symptoms, women had almost double the diagnostic delay to men.
And so what can we draw from that in terms of conclusions as to why women have worse diagnostic delay? And this is where previously this has been blamed on, well, it's the way that they health seek, and that is clearly does not seem to be the case here. The, the blame really does sit at the clinician level, it would seem to us, and that was also evidenced by the fact that the women in our group were more likely to be offered what we call a mental healthcare plan.
It's a plan that general practitioners [00:11:00] can give to people who are suffering from mental health disorders, and it allows 'em to access a certain amount of psychology support through our socialized medical system here. So women were offered that for their, for their autonomic symptoms and their problems far more often than the men were.
Men were offered chronic healthcare plans, which are appropriate, but not the mental healthcare plans. And 70% of the women were diagnosed with anxiety rather than POTS, or at least were told that anxiety was causing their symptoms, whereas around 50% of the men were told. So there were very large disparities in how the clinician perceived and, and attributed the conditions.
And so what this really does point to that this is not so much health seeking and expression of symptoms that is causing this diagnostic delay, but it's clinician perceptions. [00:12:00] And we don't know what those are, but clearly it seems that they're based on the sex differences, that for some reason when a clinician sees a young woman with these symptoms, they are definitely more likely to attribute it to a mental health disorder and delay the diagnosis of POTS.
If it's a man, they seem to have a still a delay, and we need to really acknowledge that, that men who are a smaller portion of the POTS population do not have any incidental, you know, kind of issues here. They are significant issues and that's still a four year diagnostic delay for them. But they are more likely to be expedited through to diagnosis than women.
And that really kind of told us that, that this is a really significant issue that we need to explore further in, in clinical preparedness, you know, in, in education and in, in and informing clinicians how to recognize this condition and [00:13:00] really how to not apply gender bias when, when seeing these, these people in front of them.
Jill Brook: And when each of these people on average is going to the emergency department five times, it sounds like there's a lot of financial savings to be had by recognizing it early.
So that's what's in it for them.
Marie-Claire Seeley: Absolutely. I mean, there's a lot in, in this paper for the public health system, especially in a, in a country where we have socialized medicine like Australia. We have kind of a split system here. We have both private and socialized, but heavily socialized and yeah, emergency department, we, I understand why people with POTS go to an emergency department, particularly in those first
couple of years when they don't know what's going on and it feels like they're dying and it, and it's their heart and, and it's appropriate for people to seek help. However, the emergency department is almost never the place where you're gonna get help for POTS. And, and that's [00:14:00] because, you know, their job there is to rule out the things that are gonna kill you right now.
And once they've ruled those out, their job really isn't so much around that diagnosis. And unfortunately, that's just a reality of, of how emergency departments work, particularly in socialized medicine countries. It would help, however, if, when they're excluding those nasties and they, they have this you know, young person in, from them, young means anybody under 65 really,
you know, who has no other causes for this, and it looks like POTS, to be able to actually intervene at that point and even hand a pamphlet to someone would really make a big difference. And we are starting to see in Australia with the clinical awareness being raised primarily, really through the work that we've done at the POTS Foundation, we're starting to hear more and more stories of people being diagnosed in emergency departments, particularly adolescents.
But then the problem is what do they do with that diagnosis? [00:15:00] Because often there's not the support out there in the community.
Jill Brook: Well, well, this is such good information to have though, and I feel like nobody's making as big of a difference as you are. We'll link to all of this in the show notes so that people can find it, the paper that was published and
then also, the Australian POTS Foundation where people can find a clinician guide to actually find somebody who will be able to recognize it. And then you've got all kinds of other good information there for people as well.
Is there anything else we should say?
Marie-Claire Seeley: We are, we're looking forward to this paper really being out there because I think it will help everyone with POTS around the world and really shine a light on what needs to be done, you know, particularly for women in this area. But we really appreciate you
doing everything that you're doing over there and POTScast isn't just for our American friends. It's definitely helping all around the world. So thank you [00:16:00] to Standing Up To POTS for everything that you do as well.
Jill Brook: Well, at least you know this is the club nobody would want to be in. But once you're in it, you realize the people are amazing and so
and so, it's so wonderful to have you. Thank you for your work. I know you have a million things You, need to get going to, so we'll let you go, but Dr. Seeley, thanks a million. And okay, listeners, that's all for today. We'll be back again soon with another episode. But until then, thank you for listening. Remember, you're not alone, and please join us again soon.
