PAH Initiative Events

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Access the latest PAH Initiative event videos and resources right here! The PAH Initiative presents numerous educational events featuring nationally recognized experts in PAH care and treatment. Now, you can watch events anytime using the videos on this page. Each video covers a different topic to help keep you up to date on this complex disease. You’ll also find other helpful resources below, including answers to frequently asked questions from event attendees and quick summary sheets about each event.

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Event Videos

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[on-screen text: Lana Melendres-Groves, MD, Medical Director, Pulmonary Hypertension Program] Welcome to the PAH Today National Broadcast Series. My name is Dr. Lana Melendres-Groves, and I’m the Medical Director for the Pulmonary Hypertension Program at the University of New Mexico. [on-screen text: PAH Today, Functional Class – One Piece of the PAH Puzzle] First, I want to thank you for joining us today and to congratulate you on doing all you can to learn about PAH. The goal of PAH Today is to bring the most up-to-date information to you so that you can learn more about PAH. In today’s presentation we’re going to be talking about Functional Class, one piece of the PAH puzzle. But first I want to disclaim that this presentation is sponsored by, and made on behalf of United Therapeutics, UT. Healthcare professional speakers are compensated by UT. Not all drugs are appropriate for all patients. So please, speak with your healthcare professional to determine which treatment plan is right for you. All right, so let’s get into this Functional Class.

We’re going to break today’s presentation down into three separate sections. The first, we’re going to talk about the basics of Functional Class, and then we’re going to move into the changing role of Functional Class. And last, we’re going to talk about how you can own your Functional Class. All right. So let’s get to those basics. In PAH managing symptoms so you can continue every day activities is essential. Functional Class is a way for your healthcare provider to describe the severity of the symptoms that you experience during everyday activities. You may be asking, how is that possible? Well, I can say that for me I actually just like having a conversation with my patients. It’s a wonderful way to get to know them and to know what specifically they’re able to do in their daily lives. Others may have very specific questions that they ask you, essentially all of this is to do the same thing, which is to place our patients into one of four categories for their Functional Class.

Let me talk a little bit more about that. [on-screen text: Class 1: You can ride a bike or go for a long walk without getting breathless; Class 2: You need to catch your breath when you climb stairs or go shopping; Class 3: You can walk to the end of your driveway without stopping to rest; Class 4: You experience symptoms of PAH even when resting] If you happen to be in that Functional Class I, this is a category where our patients are able to do essentially everything that they would like to do in their daily lives, that may be going for a walk, or riding a bicycle, and not feeling symptomatic or breathless when they do that. If you’re a Functional Class II, it may indicate that you can still do all of those daily activities, but realistically you become a little bit breathless or symptomatic with them. By the time you become a Functional Class III, you’re starting to notice that even your daily activities become more difficult, such as taking a shower, making your bed. And when somebody is a Functional Class IV, we’re a bit more concerned as often they have symptoms, even when they’re at rest.

Your Functional Class is based off of the information that you provide your healthcare professionals. [on-screen text: Your healthcare provider will ask you a series of questions about your symptoms and activities. An accurate Functional Class relies on you, so be open and honest about your symptoms!] So it’s essential that you have an open relationship and discussion with your healthcare provider about how you’re doing and what it is that you can do. Honestly, I don’t think that any of us like to not be able to do things and often we may not be as honest about what we truly can do, because maybe we’re embarrassed, or it’s difficult to express that and verbalize that. But this is where writing things down when you find that you’re having symptoms during one of your activities, or bringing along a family member, or a friend who notices that things you used to be able to do, you can’t do as well. This allows for that open discussion so that we get it right when we classify your Functional Class.

All right. So how do these symptoms play into PAH and the progression of the disease? Well, this is where it’s very interesting because often those PAH symptoms—breathlessness, shortness of breath, fatigue, maybe chest pain—actually are results of changes in your heart and lungs that occur prior to you feeling those symptoms. We know that in PAH that this disease occurs due to a narrowing of the blood vessels in your lungs. These narrowed blood vessels make it more difficult for the right side of the heart to pump blood through the blood vessels and out into the lungs. Over time this extra strain on the heart results in worsening of function of the heart, often it becomes enlarged, or maybe the muscle grows thicker. In the end it’s this weakening of the heart that causes many of the symptoms that you may experience.

So, when we talk about PAH symptoms, unfortunately they tend to be one of the last signs of disease progression. We can frequently see changes in the heart, potentially on an echocardiogram, that may have been gotten for you by one of your providers. We can see that the heart is starting to maybe not look as normal as it used to. And then we often are asking you to get blood tests, looking at things like biomarkers, called NT-proBNP or BNP, which are measures of stretch or strain on that heart, specifically we’re looking at how the right side of the heart is doing. And then we may get to the point that we’re asking you to do walk tests, where we’re looking at blood pressure, heart rate, oxygen, as well as the distance that you can walk over 6 minutes. This is also where that Functional Class comes into play.

You can see that as this progresses, the changes in your heart occur initially, and that by the time somebody is feeling symptomatic from those changes, we’re actually potentially approaching concerns for, does our patient need to be hospitalized, or do we need to do something more? So it’s extremely important that we start to figure out what your symptoms are, whether you’re doing better, or whether those symptoms are progressing so that we can try to intervene on your behalf. All right. So, this takes us into the evolving role of Functional Class. In the past healthcare providers used Functional Class to determine what treatment regimen you should be started on after your diagnosis. It also helped with monitoring of disease progression. And often, it was when your symptoms worsened that we were adjusting your treatment plan.

This is where things have began to change. Instead of waiting for our patients to feel worse, or have more symptoms, we’re trying to be proactive to prevent the progression of those symptoms and actually potentially improve people’s symptoms so that they can do more and feel better. Again, we know that those changes in the heart are occurring prior to maybe you feeling it on a daily basis. So now it’s an effort to try and make changes to your treatment regimen in anticipation for potential changes in your symptoms. But overall to, again, try to get those symptoms under control and improved. [on-screen text: That’s why healthcare professionals now use other methods to assess disease status.]

[on-screen text: Today, risk assessment is the established practice and a part of PAH Treatment Guidelines] Well, this is where the Functional Class is just a piece of the puzzle. Realistically, we’re looking at something that’s called risk assessment. This looks like a pretty complicated slide, I know. With all of the different numbers and variables that are there. As you can see at the top of it, it talks about WHO FC. That means the World Health Organization Functional Class. We’ve been talking about Functional Class this entire time, and you can see how, if we have you in that Functional Class I or II, you’re placed in a low-risk zone in terms of your Functional Class. If we find that our patients are not doing as well and are more symptomatic, they may be in a Functional Class III, putting them in that yellow category, or intermediate risk. And if they’re a Functional Class IV, we’re a lot more concerned about the symptoms that they’re feeling and that places them in that high-risk red zone.

As you can see, there are many other factors that go into how we establish what someone’s risk status is, but that Functional Class is something that you provide us so that we’re able to classify things correctly. So risk assessment tells your healthcare provider what your risk status is, which then helps us determine your initial treatment regimen. And also helps us with predicting life expectancy based off of not just the Functional Class, but all those components that were part of that chart. And then it may help us to determine if and when your treatment regimen should be adjusted.

[on-screen text: PAH Treatment Guidelines indicate that reaching low-risk status is an important goal] So, let’s go back to that chart for just a moment. You can see that you may fit into different categories on any given day, or at each different clinic visit with your provider. What we know is that if we can keep patients, the majority of their prognostic factors, so Functional Class and others, in that low-risk zone that we know patients do better long-term. Low risk status means that most of those test results are in the low risk category, or the green zone. All right. So, we’re going to take a little pause from just me talking, because I’m extremely fortunate to have a colleague and a very dear friend of mine, Dr. Vijay Balasubramanian, joining us today to talk about how he goes about assessing Functional Class. Vijay.

Dr. Vijay Balasubramanian, MD, FCCP, MRCP (UK):

[on-screen text: Vijay Balasubramanian, MD, FCCP, MRCP (UK), Founder and Medical Director, UCSF Fresno, Pulmonary Hypertension Program] Thank you, Lana, and it’s a pleasure to meet you all. And let me introduce myself. I’m Vijay Balasubramanian, I’m the medical director for the pulmonary hypertension program here at UCSF Fresno, which is the only recognized pulmonary hypertension center here in the central valley of California. I treat more than about 300 active patients on pulmonary arterial hypertension therapies. And I’ve been practicing PAH since 2006.

Lana Melendres-Groves, MD:

Well, Vijay, I want to really pick your brain here today because, you know, I think everybody talks to and assesses their patients a little bit differently. And when it comes to Functional Class, it’s really more of a subjective measure of our patients and what they can do. So do you have any words of wisdom in terms of how you assess that for your patients, or specific questions that you might ask them?

Dr. Vijay Balasubramanian, MD, FCCP, MRCP (UK):

Yeah. Thanks, Lana. Yeah. So, Functional Class is, as you can see, the functionality of each patient, and the patient’s perception of who they are and what they do at baseline can be substantially different. And therefore individualizing the questions to the particular patient becomes very prudent in eliciting this particular aspect, which is, as we all know, is such an important part of the conversation. So the kind of questions will be really determined based on that particular patient. Say, for example, if I have a patient who is presenting for the first time, or just had a fresh diagnosis, I would ask things like, how does this impact your day-to-day life? What were you able to do in the past? Like what is considered as heavy exertion mean? Would you go for a jog, would you go for a long walk? And how has that changed over the last several months or years? So engaging in a more personable conversation with them allows you to tease out these nuances much more clearly. And I find that extremely useful. What about you Lana? How do you engage in this conversation with a patient?

Lana Melendres-Groves, MD:

Vijay, it’s interesting, and something that I’ve recognized that I’m doing more often is when I meet my patients for the first time, I actually ask them to go back to a time that they felt normal and tell me about what they used to do, because I think that frequently we adapt to how we are at that moment, and we don’t really necessarily recognize that that is extremely different than who we used to be. So trying to gauge really who they were before all of this came about, I think helps me quite a bit. Plus it also tends to give my patient and myself goals to get back to. So I don’t know that I ask specifically, how far you walk? But probably I try to engage. I know that one of my patients, his most favorite thing in the world is watching his granddaughter play volleyball. And he was no longer able to walk down the bleachers to sit on the ground floor. And that for him meant something. I do want to ask you, Vijay, just in terms of how often are you getting these assessments on your patients?

Dr. Vijay Balasubramanian, MD, FCCP, MRCP (UK):

The short answer for your question is almost every time, this is a continuum. So, whenever we talk to patients, we are eliciting Functional Class based information: How you’re feeling? How are things at home? How are things different now that you’re on therapies? What is it that you’re able to, and not able to do? And again, not quite direct like that, but they are centered around these type of information and the conversation often is a casual conversation surrounding this type of information and you’ll get to know the patients.

Lana Melendres-Groves, MD:

So, I guess I wanted to get your insight into one more thing here, Vijay, which is, we talked about you essentially doing a Functional Class assessment on almost every visit. One of the things that we’ve already discussed today has been just in terms of risk assessment and how Functional Class plays a part in that. Is that something that you’re also utilizing your Functional Class within, in terms of determining your patient’s risk status?

Dr. Vijay Balasubramanian, MD, FCCP, MRCP (UK):

As we all appreciate, and this disease is such a hidden disease, that several assessments are needed—and we, as the physicians are right in the center—need to put all this information together to grade the severity, if you like, and grade the patient’s improvements over a period of time. And this whole system of assessment is what we refer to as risk assessments. So I think we all use it on a regular basis, almost on every visit. And the Functional Class assessment, which has been our discussion over the last 15, 20 minutes, in combination with all the objective data that we get regarding the patient really makes a more holistic assessment of the patient, both from a diagnosis perspective, as well as from how they are responding to various therapies that we have started them on, and a very proactive approach from us and the patient, obviously it’s a partnership, helps to steer the patient from a more severe level of a, what we call a high-risk patient towards the intermediate risk and towards the low risk. That is how we want to guide our management. And yeah.

So, this is a continuum as well, and we certainly do it. I certainly practice it for pretty much every clinic visit.

Lana Melendres-Groves, MD:

Well, thanks so much for that Vijay. And I think that despite the fact that we could talk on and on, we probably got to make sure and keep moving. So I just want to say thanks again for joining us and for all of your insights into your treatment of your PAH patients. And hopefully we’ll be seeing each other very soon in-person.

Dr. Vijay Balasubramanian, MD, FCCP, MRCP (UK):

Thank you again for the opportunity. It’s always a pleasure, Lana. And thank you all again. And see you soon.

Lana Melendres-Groves, MD:

It’s always such a pleasure for me to have a conversation with my colleagues. I want to thank Dr. Balasubramanian again for being here, because every time I have a conversation with one of my colleagues, I learn different ways of doing what I was already doing. And as we know, there’s never just one right way to do things. So, with that, let’s move into owning your Functional Class.

[on-screen text: What you tell your healthcare provider matters! Use a journal to track your symptoms. Explain the activities you are doing. Which activities are you able to do without symptoms? Which activities trigger symptoms? Share this information with your healthcare provider—especially activities that still cause symptoms As we discussed through this presentation, it’s so essential that you provide your healthcare provider with all the information to make sure that we’re tracking your symptoms correctly, and that we’re placing you in the correct Functional Class. But let’s be honest, remembering what we could do on a daily basis, or weeks, or months ago, is very difficult. So I encourage you to keep a journal, or keep track in some manner that works for you, so that when you present to your healthcare provider, you’re able to have those conversations and discuss all of your needs.

I encourage you to get your own journal at PAHinitiative.com/resources. But it’s not just about the activities that you can do. And that’s what we’ve talked about thus far today, but it’s often about the activities that you’re unable to do. For instance, are you avoiding making plans with friends and family? Often that’s an indicator that maybe you’re not feeling as well, or if you’re avoiding an activity because you know it will cause you to be short of breath, or feel poorly. This is where having that open and frank discussion with your healthcare provider can be so helpful in determining your needs.

In summary, Functional Class is a measure of how your symptoms impact your daily activities. It is important to keep track of your symptoms and activities for an accurate Functional Class. Your healthcare provider depends on you to provide that information. Also essential is that Functional Class is now an important part of risk assessment. As we’ve mentioned, it’s another piece to that puzzle. By monitoring many different aspects of your PAH your healthcare provider can catch disease progression earlier and may help you reach a lower risk status and improve your symptoms. At your next visit ask your healthcare provider about your Functional Class and risk status.

Functional Class – One Piece of the PAH Puzzle (20 minutes)

Find out how Functional Class is incorporated into risk assessment, which can help predict your 5-year survival and shape your treatment plan. Drs. Lana Melendres-Groves and Vijay Balasubramanian explain the important role you play in determining your Functional Class.

Presenters:

Lana Melendres-Groves, MD

University of New Mexico

Vijay Balasubramanian, MD, FCCP, MRCP (UK)

UCSF Fresno

Frequently Asked Questions

FAQs

Learn from questions asked by others during the 2020 National Broadcast series.

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Event Summaries

Download the event summaries below for quick access to highlights from each event. If you have any questions about the topics covered, you can easily bring the summary sheet to your next appointment to discuss with your healthcare provider.

A more in depth look of how PAH affects the lungs, and how symptoms are caused

Beyond the Basics

Understand how PAH affects the lungs and causes symptoms.

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Learn why your PAH risk status is so important, and the role it plays in your PAH treatment

How Decisions Today Can Shape the Future

Learn why understanding your risk status is important for your PAH now and in the future.

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Learn about the three PAH pathways, what these pathways do, and the role they play in your treatment journey

The Pathways to Treatment

Discover what the 3 PAH treatment pathways do and how they might help you.

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Discover ways you can stay informed and motivated during your PAH treatment journey

Moving Forward

Learn more about the steps you can take to stay informed and motivated to continue your treatment journey.

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