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PAH Today: Shape the Future - phaware® interview 353

I'm Aware That I'm Rare: the phaware® podcast

Release Date: 12/02/2020

SPECIAL EDITION: How Decisions Today Can Shape the Future

The PAH Initiative and United Therapeutics are excited to bring you the PAH Today National Broadcast Series. This series of virtual events is intended for adult patients with pulmonary arterial hypertension (PAH) and their caregivers.

Advancements in the care and treatment of PAH are improving the lives of those impacted by this life-threatening disease. The National Broadcast Series will include insights and perspectives on today’s approaches to managing PAH from nationally recognized PAH healthcare providers. Join patients and caregivers across the nation to hear current considerations in the care of PAH.

This is the second of 4 PAH Today broadcasts to learn about risk status, an important part of today's approach to treating PAH. You'll hear how risk status gives your healthcare provider a new way to assess your progress, and how it could help determine whether more can be done to improve your symptoms today and down the road. Presented by Dr. Lana Melendres-Groves the Director of the Pulmonary Hypertension Program at the University of New Mexico and Nurse Practitioner Melisa Wilson. Learn more at: www.pahinitiative.com 

Lana Melendres-Groves, MD:
Good afternoon, and welcome to the PAH Today National Broadcast Series: How Decisions Today Can Shape the Future. First, I would like to give a disclaimer that this presentation is sponsored by and made on behalf of United Therapeutics. Healthcare professional speakers are compensated by UT. Not all drugs are appropriate for all patients. Speak with your healthcare professional to determine which treatment plan is right for you. Patient experiences relayed during this program may not represent the experience of all patients.

Today's presentation consists of three parts. The first is talking about what's beyond being stable, which at times can be a very difficult concept to understand. I like to recommend to my patients just to think about how they feel, and that's where we'll start from today. The second portion is going to be risk assessment. And again, what I'm doing is trying to present something that is hard for, often, providers to understand, but hopefully both Melisa Wilson and I can break it down in a manner that's understandable. And third, we'll talk about your risk status goals. This is what your journey is about and is very individualized to you.

So let's get into what's beyond being stable. For me, I love to talk to my patients just about how they feel. Where are they now as compared to where they were when they were diagnosed or prior to starting treatment? Also, are they feeling better? Do they feel the same? Or are they just having to adjust to a new normal? And what is that new normal to them? Now please, don't get me wrong, getting to stable is an important milestone in your PAH. Being stable may show that you're doing better than you were and that your treatment is going in the right direction. You must give yourself credit. You have been motivated and invested in your own care and you've come so far. But we can't rest there, we have to continue to move forward and improve your overall quality of life.

In order to continue to get there, we ask always so much of our patients, and we realize that. But this is how you can really improve your overall long-term care and prognosis so that you do well for a very long time. Many of those aspects of care have to do with adjusting your lifestyle, as may be necessary. For instance, we talk a lot about eating a low sodium diet, or how can we get you exercising a bit more? Also important in that is making sure that you see your healthcare provider in a timely manner. I know that right now that can be difficult, but it is so important that we make sure that all of these testing, that often becomes labor intensive for you, that they get done so that we understand how far someone might be walking on their walk test or how they're doing in terms of their overall functional class and exercise tolerance.

There's always more to do, and we have room for improvement. So if you were ever thinking, "I wish I had more good days than bad," or, "Just a couple of more good days would really make the difference in how I feel." Are you ever declining invitations or avoiding making plans? Or do you just feel like, "I would really like to be able to do more around the house or out in my garden." This is where it's so important for us to talk about something called risk assessment. This is how we incorporate all those tests and how you feel into something called a risk status. It tells not only the patient but also the healthcare provider so much more about whether we're on the right track with your treatment plan and how we might be able to improve your symptoms even further. So, what is risk assessment?

This concept is at times very difficult to understand, even for me, who's been doing this for quite some time, but it's a different way of looking at PAH. We now know that this risk assessment is so essential to how we treat our patients that it's actually become part of our treatment guidelines. It's recommended that patients receive a risk assessment from their provider on their risk status at least every three to six months. This measure here's how well your treatment plan is working for you and it informs your healthcare provider if potentially changes should be made. This is just an example of what a risk assessment looks like. It's a table that often we color code in green, yellow, and red, because I think it helps us, just visually, to understand if we're getting somebody to where they need to be. There's a lot of information in this table, but we use all of those tests that we ask you to get to be able to fill it out. And it often looks something like this, where maybe you're feeling quite good and are in a low risk category, in the green category for how you feel and what you can do. But maybe some of the blood tests we've gotten or some of the other procedures that you've done would indicate that actually you're in more the yellow zone.

We take all of those together and are able to come up with a score that indicates a risk status. Knowing whether someone fits into a green zone, low risk, an intermediate zone, the yellow, which is intermediate risk, or in the red zone, high-risk, we're able to know if somebody will do better and have a better chance of survival over the next five years or if maybe there's a lower chance of survival over that timeframe. I know that I talked about this in somewhat of a scientific way, but I would really like to invite my colleague, Melisa Wilson, who is a doctor of nursing to give a little of an example of how she talks to her patients when it comes to risk assessment and risk status.

Melisa Wilson, DNP:
Hi, I'm Melisa Wilson, nurse practitioner and program coordinator for the pulmonary hypertension program at AdventHealth Orlando. I would like to talk to you today about doing risk assessment with my patients. In the past, when we discuss risk assessment, we used to talk really in terms of how a patient's feeling, what we call your functional class, meaning you tell me if you feel short of breath with certain activities and then I take that and put that into a category. But as humans, we tend to be very smart. If there's things that make us feel bad, we just don't do them. So instead, what we have learned over time is that there's multiple what we call variables or things that we look at, including your labs and PFT findings and echocardiogram and of course your heart cath information that we can put all together and actually come up with a composite score, which puts you into a category of a high, low, or intermediate risk patient.

This is more prognostic, meaning, telling me how you're doing not just today but how you're going to do long-term. This number and this grouping is not permanent. It's not that if you were categorized as high risk that that's where you are forever. In fact, what that does is it gives me, as your clinician, the opportunity to take all of this data that we used to get in pieces or parts. I get your cath data today, I get your lab some other time, I get your six minute walk distance, and then have to put that together to say, "Hmm, am I doing enough for you as your provider?" This category or this scoring allows us to put that altogether and take a look at everything at once. And then it tells me, if you're high risk for example, that I have a lot of opportunity as your clinician to partner with you to make you better. I can do that through therapies, through rehabs, through diet. All of those things make a difference.

So when I get you at high risk, my goal ultimately is to move you to low risk. Low risk is where you have the best outcomes. That's going to happen over time. We're going to go from high risk to intermediate risk to low risk. And it's our job together to get through that. I'm still going to consider, how are you doing? in all of that, but that's just now going to be one part of the puzzle. So it gives me the opportunity to look at you wholistically, as well it gives you the opportunity to have something to work towards in a notable way to notice your improvement in how you're doing overall with pulmonary arterial hypertension. So it is an exceptionally helpful tool that we didn't used to have in the past that I've become quite passionate about. In fact, with my whole clinic team, we all do this together, 100% percent involvement, and having these great conversations with all of our patients so that you understand how you're doing, you can make modifications as well.

I find it changes things like your diet choices. Sometimes people, we make choices that we know aren't always the best things for us. Maybe it has a lot of sodium. Well, now understanding that sodium intake could increase what's called a BNP or an enzyme your heart gives off when it's under stress or failure, now will make many people, encourage many people to not eat those high sodium foods knowing that it can now impact how they're doing long-term. I also find that it helps with things like improvement in six-minute walk distance, because it helps with the compliance with rehab because you have a goal, something to achieve.

Ultimately, our goal with treating you is to get you from high risk to intermediate risk to low risk, and low risk is where we want to keep you. Low risk we know is associated with better long-term outcomes, meaning that you're really doing very well from a pulmonary arterial hypertension perspective. So we will partner together to get you through therapies, through rehab, to get you engaged in your healthcare so that we can ultimately get you to that low risk and help you live your best life with PAH. And that's how I talk to my patients about risk assessment. Thank you, Dr. Melendres-Groves for the time today.

Lana Melendres-Groves, MD:
Thank you so much, Melisa. We really appreciate your insight into how you talk to your patients. It really adds to the conversation. All right. Well, we've come to the third portion of this presentation, which is a discussion of your risk status goal. Now, I know that both Melisa and I talked a bit about risk status and risk assessment. We showed you a table and we talked about some of the numbers that we'd look at to define how well we think someone will do over the next five years. Now it's a chance for us to really talk about how you individually may do, and that comes to you talking with your healthcare provider. This is essential for everybody. And often our goal is to reach the green zone, that low risk status, but I think most importantly is, are we improving your risk status? This is something that should be a goal for everyone.

Overall, we know that achieving more low risk criteria improves your chance of survival. This is a graph from one of our European registries that shows your prognosis can be determined in terms of the number of low risk criteria that were looked at at their first follow-up visit. You can see that those patients who were able to achieve three low risk criteria had a 97% survival out to five years, while those who were unable to achieve that didn't do quite as well. Some other things to think about, maybe, how do you prepare for your next visit? I really ask that my patients think of questions that they can write down such as, what is my risk status? Or, is low risk status the right goal for me? I think that also understanding your walk distance and is it improving? I ask my patients to get echocardiograms frequently. So understanding what those tests results mean may be important you. Or, how can you improve your functional class? When you do improve your risk status and experience fewer symptoms, it may help you to do more in your day and build confidence about your future.

In summary, today, PAH specialists perform a risk assessment and then calculate your risk status to show how you're doing today and whether you're on the right track, whether more could be done to improve your symptoms and increase your chances of survival. Risk status helps the healthcare provider determine whether changes in your medication or treatment plan could help you reach more low risks goals, lower your risk status, or improve your symptoms.

Please join us next time for our third virtual event. We will be talking about pathways to treatment. You can register today or any day at www.pahtoday.net. And please consider joining the PAH initiative at pahinitiative.com, where you can stay informed, stay motivated, and stay focused on your future. Thanks for joining us.

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