PAH Life Expectancy & Risk Status

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.