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

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Elise Whalen, APRN phaware® interview 335

Jul 28, 2020

Elise Whalen is a pediatric Nurse Practitioner from Texas Children's Hospital’s Pulmonary Hypertension program. In this episode, she discusses her role as an NP, congenital diaphragmatic hernia, and the impact PH not only has on her patients, but parental anxiety that impacts the entire family.

My name is Elise Whalen. I am a pediatric hypertension nurse practitioner at Texas Children's Hospital in Houston, Texas. We are one of the accredited pediatric PH centers and we're the only one in Texas. We get patients from really all over the country. We're also a lung transplant center. I would say we'd have about 350 to 375 patients that we follow directly, and we're growing every day. We have a pretty expansive team. We have social work. We have a nurse coordinator. I am the only nurse practitioner on the team. We have six physicians and we're trying to recruit more exercise specialists, a whole gamut of awesome people to help us kind of provide a multidisciplinary approach to our care.

At our hospital, we are blessed. We have fellows who work with the attendings and they handle a lot of the acute ICU care. My role at Texas Children's as an NP is I'll see the kids when they're getting a little bit closer to discharge and I'll work with the families. A lot of times, like I mentioned, they come from so many faraway places that I will help them find closer pulmonologists, a closer cardiologist and we coordinate, we collaborate on our care just to kind of help with travel and really provide better quality of care for our families, so they don't have to travel every three months to Texas if they're living in Oklahoma or something like that.

For our families or patients who come outpatient, it's a really good bridge. I can speak to what happened in-patient and then I'll see them a lot of times it's on my own or there's a primary PH physician that usually kind of takes care of them, but it just depends. So I have a pretty prominent outpatient role as well. Sick visits, so if there's a patient who needs to get in urgently and their PCP can't see them, I usually will see them that day.
Then I have my own clinic. We have a congenital diaphragmatic hernia outcomes clinic. We are a center that does FETO [fetal endoscopic tracheal occlusion] and so we are trying to look at our outcomes for our kids who do have FETO and it's a collaborative clinic with pediatric surgery. I do a lot of the research for the program. We're involved in several registries, international, national, and then we're trying to really resurrect our local registry. So I help with that and then we're kind of nearing the end of our actigraphy study with which we were collaborating with Colorado Children's. I'm trying to really create a great support network for our families.

So I'm fairly new to the role. I started in 2018. I realized when I joined that there were a lot of areas that I felt like we could really improve the experience that our patients and families have. As a chronic disease, there's a lot of factors. There's a lot of psychological things, there's a lot of socioeconomic issues that pertains to them and a lot of barriers that I think keep our patients from actually really succeeding. I think that mental health support, I felt needed a little bit more emphasis. Then I felt like that was something that I could do as the PHNP to really help with that.

So we work with the Pulmonary Hypertension Association who has been tremendously helpful in helping us start this support series. I networked with other pediatric centers. Most of the pediatrics centers, they're actually parent-led support groups. So that was a little bit challenging, because as a provider, I don't have a child with PH. I don't have that firsthand experience, but I take care of so many PH patients that I know that that needs there. So we had our first meet and greet last summer. It was a great way for our families just to come and get together and really just talk about what life was like with having PH and how do you do this? It was awesome because a lot of our subcutaneous remodulin families came. I think they felt unified in a way that they could say, "Oh, what about this, what do you do for that?" I thought it was a really great opportunity for them to really get together for that.

So we have about four meetings a year and they're all different themes. Our last one we had was actually specifically for teenagers and there were breakout sessions with PACT, their Palliative Advanced Care Team. Psychology. We had adult physicians, so we're trying to improve our transition pathway for our pediatric patients who go from pediatric care to adult care. They came to our team day. It was like a team time day. So they came and talked about what life is like as an adult patient with PH. The parents and the patients are actually split up into different groups and the different specialties came to each group and they just talked about the issues that pertain to that.

We had adolescent medicine to talk about, intimacy things and reproductive issues. Gynecology came. It was awesome. I think a lot of the teenagers had never met another teenager who had pulmonary hypertension, which is, crazy. Especially at that age you meet somebody else who also is going through the same thing. I think it really stuck with them. Then the parents, a lot of the issues that pertain to, "What happens when my child turns 18?" We had some families that had kids with developmental disorders and they were like, "How do I bridge that when they become an adult and I'm getting older." It was awesome.

We hope to continue doing it and just making it grow and grow. I mentioned that we have a lot of patients from far distances. One of the things we want to do next time is to do a webinar of some sort so families can kind of tune in, I guess. They can remotely come into those sessions, because I think that would be a way that we could really reach more people. There aren't any other pediatric centers that are doing this. We are the only one. Like I said the other pediatric support groups are all parent-led. So I'm trying to get my co NPs and my nurse friends at the other institutions to consider maybe starting this because I do think it's a huge need.

The prevalence of pulmonary hypertension in pediatrics is four to 10 cases, per million, per year. It's not common at all. I think with the new therapies and management strategies that have come about, we are now kind of working on just really lengthening and really promoting the quality of life that our patients and really families have. I was kind of inspired, Boston Children's is doing great work with quality of life studies and they wanted to look at the psychosocial wellbeing and the quality of life that the patients and families really have in pediatric PAH. I want to say it's the only study that I could find that really looked into this.

There's a lot of functional limitations. There's a spectrum of the limitations that the PH patient might have. Then there's limitations and the caregiver burden that a lot of our families feel too. I know that with patients who have insufficient social support, there is caregiver depression, adjustment issues, all of that. So this study that Boston did, they found that parental adjustment problems and issues with not addressed anxiety, depression and all that, actually impacted the total patient and parent quality of life for both the patient and the parent.

So, obviously, I love my PH patients, but I also have to keep in mind the parental anxiety, that the families have, because it does impact the way that my patient is going to really feel in the long run. There's a lot more studies I think that should look into this. I think it's a world that needs a little bit more exploring, but either way, I think as somebody who has chronic disease and has to go to multiple clinic visits a month and miss days of school for all of that, I think that supporting their mental health, that's so important.

My name is Elise Whalen and I am aware that I am rare.

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