Managing Your PAH

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 3 to 6 months. This measures how well your treatment plan is working for you and it informs your healthcare provider if potentially changes should be made.

[On-screen text: Risk assessment: a closer look. Your PAH specialist reviews the results for many of the tests or evaluations you have during your visit. One way healthcare providers conduct a risk assessment is by assigning a score for each test or evaluation based on its result. Then they use these scores to calculate your risk status. on-screen visual: Example risk assessment form with example variables, low-risk, intermediate risk, and high risk columns.] 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 that we’ve gotten or some of the other procedures that you’ve done would indicate that actually you’re in more the yellow zone.

[on-screen text: Risk status. It’s more than a status—it can change your future.] We take all of those together and are able to come up with a score that indicates a risk status, and here, demonstrated in the bottom corner with 1.4. 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 5 years or if maybe there’s a lower chance of survival over that time frame.

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 like 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 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 6-minute walk distance, and then have to put that together to kinda say, “Hmm, am I doing enough for you as your provider?” This category or this scoring allows us to put that all together 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. And 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 is 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 holistically, 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% 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 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 6-minute walk test 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.

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 3 low-risk criteria had a 97% survival out to 5 years, while those who were unable to achieve that didn’t do quite as well. [on-screen visual: Chart showing achieving more low-risk criteria improves your chance of survival. Patients who achieved 2 low-risk criteria had about 76% chance of survival, patients achieving 1 low-risk criterion had about 67% chance of survival, patients achieving 0 low-risk criteria had about 34% chance of survival. Note: Prognosis was determined by the number of low-risk criteria at first follow-up visit. Follow-up visit had to occur within the first year of diagnosis.]

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 to 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-risk goals, lower your risk status, or improve your symptoms. [on-screen text: Achieving more low-risk goals improves your chances of staying healthier longer]