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

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Elise Whalen, MSN, APRN - phaware® interview 414

May 9, 2023

Elise Whalen is a Family Nurse Practitioner from Texas Children's Hospital’s Pulmonary Hypertension program.

Elise discusses the importance of mental health screening and how the PPHNet is undertaking a multi-center study addressing the impact anxiety and depression has on their pediatric PH patients.

My name is Elise Whalen. I am a family nurse practitioner at Texas Children's Hospital. I have been with the PH program at Texas Children's since 2018. Since that time, my primary efforts have really been on how we can improve the quality of life for children and families who have been diagnosed with pulmonary hypertension.

I am actually working on my doctorate in nursing practice. As part of that degree, we get an opportunity to pick a project, something that we're passionate about. When I started with the team, I noticed that there were patients who likely had symptoms for anxiety and depression, but weren't quite addressed. Providers might say, "Oh, they have a long history of anxiety, depression, or their family history." Or something like that. But there was never any action. So my goal was to create a project within our program to open the eyes of families and to help find anxiety and depression in this patient population because I know that these kids have it.

Essentially, what I did was I first looked in the literature, I said, I know that this is out there, COVID-19 happened. We know that the rates of anxiety and depression have increased from the pandemic, likely due to separation of children from peers. Really during such key pivotal developmental phases, children were isolated socially, families were isolated socially. Families might have lost their jobs. Educational adaptations, virtual schooling is not for everybody. I think a lot of families and children suffered from that, as well.

Since the pandemic, we've seen a rise in our emergency department rates. They've gone up by 31% in the age range of 12 to 17 years old. Because of all these things, children who have chronic illness likely are at an increased risk. So why are we not screening for this? With pulmonary hypertension, which I know many of the listeners of the podcast likely at least know what PH is; but if you kind of peel back the layers, there's so many implications of the disease beyond the actual physiology itself.

I think about if I were a child who had PH or if I were the parent of a child who had PH, how many medications are these kids having to take in a day? It's not just one time usually. It's multiple times. There's probably a lot of times that they're having to stop and go to a doctor's appointment. Those medications aren't cheap and they have not gone down in cost. Last time I checked a bottle of liquid sildenafil was over $10,000. Whenever I tell parents that, they're always like, "Oh my gosh."

Then of course, the worry of the morbidity, mortality of disease. If you Google it, it's not reassuring. Also for families to actually have to explain to the community about PH, it's not a common disease. Most people don't know what it is. So how can we, as care team members, help support these aspects of care?

One of my colleagues in San Francisco, Claire Parker at UCSF, she and I, through the PPHNet, (the Pediatric Pulmonary Hypertension Network), we are leveraging the multiple centers in that network to do this multi-center prevalence study. There's about 12 to 13 centers who are involved in this to really understand how many patients that we care for have anxiety and depression. Then, we're also tracking number of patients who we referred for psychology intervention, things like that. We just said, "How prevalent do you personally feel anxiety and depression is in your patient population? How comfortable do you feel in screening? What are your barriers?"

The primary things that we found were a lot of providers felt that there was just a lack of mental health services. I think nationally, there's been a big push to increase access. But that has been a very significant perceived barrier. That was our number one perceived barrier. A lot of providers felt unfamiliarity with the screening tools. They didn't quite know which tools to use, how often you use them, how do you interpret scores, things like that. Then, the other thing of this is, our role is to care for PH. How does mental health fit into that? A lot of providers said, "That's kind of out of my scope. That should be the pediatrician's job. It's not really part of PH management."

With all of this information, I took this back and said, "Okay, I need to create something for my team with these known barriers. How can I help make this a successful project?" So we took this back and I did one-on-one education. I looked to identify different stakeholders, who are the people who will help make this project a success? And who are the ones that I need to work with and try to figure out their skin in the game? What can they get out of this?

We looked at our current structure.  Within our program, cystic fibrosis has a very well standing mental health screening program. I kind of took that and I adapted it. We've pretty much targeted kids who are 12 to 18 and beyond. That's our primary group of patients. So far, we have done a one-time screen once a year. The data that we've gotten from it has been very humbling. I collected data for this over six months. We ended up screening 67% of our population. Of that group, a majority of patients, at least, had mild anxiety or mild depression. Four of the patients were screened for suicide and two of the patients were found to have cutting and other physical markings of self-harm.

We didn't expect to find that. It was very incidental. But I think because of what we found, it's really sparked an awareness amongst our team members to ask about questions. I also think that families, because of these screens, the discussions that we had about their positive screens, I think it opened the door to other discussions about how kids are feeling with this illness. And with really just the pandemic itself and the stresses of that virus and its potential effects in PH kids. So it's been interesting.

So far, we're just trying to target at least once a year screens. Then obviously, for the kids who had abnormal screens, depending on kind of what their score was, we have paired with their pediatrician if they don't live in the Houston area or we will pair with a psychologist. So our palliative care team, we're very fortunate, has a psychologist. She has helped us for many of our referrals to see them. She can do virtual visits, which has been a really cool thing.

It's been interesting. It's been very humbling. There's been a lot that we've learned about it. We're working nationally. I'm helping to lead a project with Claire who did the initial provider survey with me. We're doing a multi-center study at 12 to 13 centers across the US and a couple in Canada to look at the prevalence. We're hopeful that with the data that we find from this multicenter study, that this will make screening for all PH patients more of a standard of care. So we'll see. It's early, but that's kind of my project in a nutshell. I feel pretty passionate about it.

I would say that the impact of this on parents and caregivers, when I started this project, I really just wanted to focus on the kids first; but there's a lot of data out there on the impact of parental stress, pretty much the parent coping on the child's quality of life. I think in the future, I think looking at parental stress and parental screening and parental mental health is likely a key component to the child's quality of life. That, I think, will be something for future projects. I don't know, but I wonder how many parents might have thought about the fact that their child could be at an increased risk in addition to their baseline risk for anxiety and depression. I'm hopeful that with this project, they'll have at least some discussion about it.

My goal was just to help at least one family, one patient. I think looking back, I think I was able to do that. I was able to get at least one patient in, and I was able to get one patient in with family therapy. Since their screen and since that therapy, they've said this has changed their life. So I consider that a win.

What's great about this project is that I'm hopeful long term that this might set up the stage for screening as a standard of care. Not just in kids, but maybe this will open the door for screening across the lifespan for patients who have pulmonary hypertension.

Thank you all so much for listening to my thoughts on mental health screening, and it's important in improving the quality of life of pediatric patients who are diagnosed with pulmonary hypertension.

My name is Elise Whalen, and I am aware that my patients are rare.

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