Sandeep Sahay, MD and Jordin Rice, RN - phaware® interview 364

Pulmonologist Sandeep Sahay, MD and Jordin Rice, RN from Houston Methodist Lung Center discuss a nurse's role in informing and educating pulmonary arterial hypertension patients about clinical trials. 

Sandeep Sahay, MD:
I am Sandeep Sahay and I'm a pulmonologist at Houston Methodist Lung Center, Houston Methodist Hospital, Houston, Texas, and I specialize in pulmonary hypertension and I'm actively involved with clinical care of pulmonary hypertension patients and also in clinical research.

Jordin Rice, RN:
I am Jordin Rice. I am a research nurse at Houston Methodist. I work directly with Dr. Sahay. We work with all types of PH patients near and far, and I have had the pleasure of becoming a research nurse after caring for them at the bedside. It's just been a wonderful experience. They're some of my favorite patients I've ever met. And I really look forward to talking about clinical trials and how we take care of them and manage their care.

Sandeep Sahay, MD:
Let me start with this. What is a nurse's role in informing or educating PH patients about the clinical trials?

Jordin Rice, RN:
I think first and foremost, we approach everything as a team. You and I work really closely together, looking at patients, figuring out if people qualify. You obviously know things that I don't. I might think of things about patients that you don't, like their commute, how much time it's going to take away from their normal job to participate in a trial. So nurses I feel like are really instrumental in that process in making this a realistic thing, to be enrolled in a trial. We help logistically get patients here and we talk about kind of the ins and outs of trials. Not all patients are going to qualify for something. It's up to us to really dive into a patient's medical records and talk to them directly about what it means to actually be in a trial. You have to come into clinic a lot. You have to talk to us a lot and get really close to us. So it's important that we establish a good relationship with patients, right from the beginning, to avoid any hiccups and make sure they get the best possible experience out of participating in a trial.

Sandeep Sahay, MD:
From the nurse's perspective or especially the research nurse perspective, because in the PH disease state, research plays a very important role and it's important to stay relevant to the newer therapies and also participate in the newer trials so that we can have more treatment options for our patients. So how do the research nurses think about the clinical trials about why it is so important for the patients to enroll? Especially if you are talking to a patient, let's say you are investigator or the PI or the physician asked you, "Hey, contact this patient, maybe for this particular trial." And now you are speaking to the patient and you feel like the patient is probably not ready. So how do you approach those kind of things in your mind? How do you think how important these trials are?

Jordin Rice, RN:
I think you first have to understand a patient's knowledge about clinical trials. Some people, they might work with companies in industry. They might have a family member that has participated before, or they might not know anything. They don't even know what placebo controlled means. So getting to know where a patient's starting point is, is typically how I start approaching patients. We recruit tons of different ones. It depends on what type of PH you have. We have to talk to patients why this would even be beneficial to them. A lot of patients think they might be a guinea pig and this doesn't benefit them at all. It just benefits us because we get to learn from them. But that's really not the case. Clinical trials makes medicine more accessible for patients.

You can get routine testing, you can get an echocardiogram, a right heart catheterization. You can get doctors' visits, all paid for by the study. Some of our patients are uninsured, undocumented. Some of them are very wealthy. So we see a good variety of people that come in needing the same thing. Whether it's just medical care that can benefit patients, but the substances that we're actually treating them with and testing, they can be really exciting and show the first glimmer of hope of this disease actually being reversible or curable, which is exactly why I do this job.

I don't have any interest in keeping up with the status quo. I want to keep advancing science. And I know, Dr. Sahay, you're the exact same way. You're an absolute pusher. So when we see a patient that is potentially eligible, meeting them where they are, making them realize that this disease is chronic, they're going to be dealing with it for their whole lives. Hopefully not. Hopefully, we find some kind of cure or treatment that's going to make it easier, but seeing what their quality of life is and what they want that to look like a few years down the road. We collaborate a lot together on talking to patients and making sure they know what they're signing up for and making sure they know they're not just an experiment. They're a person. These drugs that we're testing are exciting to us, but I hope they're equally as exciting to the patients we talk to. Whether they have the time to participate or not, I just want to open people's minds about research when I have those conversations.

Sandeep Sahay, MD:
In your experience, when you talk to these patients, especially about the clinical trial enrollment, have you encountered that there are some obvious barriers? In your experience, what did you find that is the most common cause for them to decline? Or if you have something like that in your mind, then how do you think we could do better in that to encourage them to participate in the trials.

Jordin Rice, RN:
Every single one of our patient is human. They typically have a job and some of them have kids. Some of them are living far away. So we have to be realistic in how a trial can fit into their life. Sometimes trials can be every few weeks, sometimes it's once a month. It really just depends on what trial we're talking to them about out. We're also strategic in the trials that we offer to them. I'm not going to offer a trial that you have to be here every single week for somebody that has four kids and a full-time job and is a single mom. That's not going to work for them. However, there are exceptions that we can make and work arounds we can do in order to make these trials work for patients, as well. So if a patient, they live five hours away, we can put them in a hotel room the night before or we can do an early visit, we can do a late visit. We stay well after the 9:00 to 5:00 or well before the 9:00 to 5:00.

Being able to tackle those barriers with patients is instrumentally important. We can't just tell patients Monday at 8:00 AM, you have to be here and no exceptions. We really have to work with them. Also our patients sometimes are not ready for trials. I don't want to say that's a huge barrier, but if they're still getting used to being diagnosed with this disease, if they're freshly diagnosed, getting into an experimental trial might not necessarily be the first option for them. We need to get them on stable therapy. We need to get them comfortable living with their disease before we throw them into something that's unfamiliar, mostly because we have to get patients to manage their own medications and be compliant. That can be easier said than done.

We have medications that patients have to take three times a day and be consistent with their diuretics and be consistent with so many things. That's a lot harder when you're living a real life and are discharged from a hospital. So there are several barriers. And sometimes as a nurse, I feel like I can see those or patients are more forthcoming in talking about those to me. Not that they would never talk about it to you, but if you talk about a trial to them, I've seen them say, "Yeah, yeah, sure. I'll participate." Then you leave and close the door. And they said, "What did he say? I didn't really understand that. Can you explain that more?" I feel like I can benefit patients in that way. I just have a different perspective and you are rushing around a lot and you don't have a ton of time. So I feel like I can fill those gaps a lot. And it makes us a really great team.

Sandeep Sahay, MD:
How do you think that nurses view enrollment in clinical trials differently than physicians?

Jordin Rice, RN:
That is a tough question, and it definitely doesn't have a right answer. It's going to be different for every coordinator, but what really stands out to me with trials, if I'm talking to a patient, is somebody that's just as excited as I am and just as willing as I am, because I'm willing to jump over barriers and go through hoops to get somebody on the schedule and get things that work for them. I want a patient to do that same thing for me, because we're a team once they enter a trial. Sometimes when patients are scared or they're really hesitant to enter, I find it harder to enroll them and get them excited and get myself excited for it, simply because I just want to make sure it's the right step in their care and treatment. If they're hesitant, it honestly makes me doubt that sometimes. There are definitely more issues that come up and more things that we look for in patients, but really that excitement and wanting to participate in research is something that I think is so important. I would love for my patients to think that same exact thing.

Sandeep Sahay, MD:
What do you enjoy most about working with or treating PAH patients?

Jordin Rice, RN:
PAH patients are really special, and if you work with them or if you are one, you probably know the resiliency that you have to have to one, be diagnosed with a chronic progressive disease and two, to live with it. Whether you're on oral therapies or you're doing something like subcutaneous Remodulin, you have to just be very aware of your care and very in tune with how you feel and be an advocate for yourself. Sometimes these patients are just dealt the worst cards. We've had several patients that tested positive for COVID at the beginning of the pandemic and it worsened their disease severely. It's tough to see these things happen, but sometimes they are unavoidable, but seeing patients want to get better and fight every single day to do that is really exciting.

I worked with these patients when they got admitted to the hospital. They were getting heart catheterizations. Some of them were decompensating and needing treatment in ICU. I've never seen so much fight in a group of people. Especially since a lot of our patients are rather young and mostly women, it seems like a group that I can relate to, but also every other patient that we have, male or female, young or old, they all seem so just strong. That's the best word I could use. And you probably understand that resiliency yourself. I just really do love treating them so much and working with them. I wish one day I don't have a job because we cure this disease. It's easier said than done, but I hopefully, hopefully think we're going to do it one day.

Sandeep Sahay, MD:
I absolutely wish so. Talking to you, one thing which comes to my mind, which my mentor taught me, Dr. Frost... I guess everyone knows her in the PH world... always remember that your clinical trial should be the right fit for your patient and your patient is the right fit for the clinical trial. Every time whenever I think of a patient in a clinical trial, I just sit back for a minute and just think, "Is this trial going to benefit my patient? And is the trial going to get benefit by enrolling this patient?" These are two different things. And I'll be very honest. It took me a little time to really understand this difference. It sounds similar, but it is not actually.

Jordin Rice, RN:
I think whether or not you're participating in a clinical trial, you really have to take charge of your care. We see patients that do this and don't do this. The people that do it and take charge of their care and learn and absorb all of the information we give them, they do tremendously better. That goes with clinical trials, as well. You can be passive in your treatment and you can just follow through with the motions. But if you sit down and listen to everything we say and use us as resources and ask questions and navigate support groups online and use resources online, I really do feel like you'll do better, because it makes you feel like you're in control of something that's absolutely uncontrollable. I wish I could help every single patient and make everything better, but patients really need to do that for themselves, as well. They're their biggest advocates. And as much as I advocate for everybody, it's not as easy said than done. With clinical trials, if you have not participated in one or you're a patient listening, I would just look into some information. You can ask your doctors. You can ask nurses that you regularly see. Usually they're available at larger institutions. If you're not near a large institution or that's not as accessible, there can still be options with that.

They really do change lives and not all of them are successful and become FDA-approved drugs. However, I still think there is value in participating in a trial, even if that's not the case, because one, you can get that medical care. And two, you form this relationship with staff that I think is instrumental to learning and being successful in coping with this disease on your own, because patients they come into the hospital for treatment and we expect them to be competent and know everything once they're discharged. Know how to manage their care outside of the hospital and mix their medications if you're on Prostacyclin, and that's not realistic. You have to have other ways of learning. You have to have mentors. You have to have people that are in your corner and supporting you. We can definitely be those people for patient. I really need patience to be those people for themselves sometimes, too. I want to support them and make everything better, but being able to learn and be a sponge is going to just change your life. We have so many different patients that either do well or they don't. There's no common denominator between all of them, but I really do think if you're always open to learning and really want to learn consistently and take charge of your care, you're going to do as well as you can. And we can definitely make that possible, especially with trials.

Sandeep Sahay, MD:
I hope this helps our patients understand about the clinical trials a little bit more, and I am Dr. Sandeep Sahay.

Jordin Rice, RN:
And I am Jordin Rice. And I'm aware that our patients are rare.