I’m Aware That I’m Rare: Claire Parker, MS, PNP, AC (479)

the phaware® interview

In this episode, Claire Parker, a pediatric nurse practitioner, discusses the results of a study that examined the prevalence of anxiety and depression among adolescents with pediatric pulmonary hypertension. The project aimed to incorporate mental health screening into the standard care for PH patients, similar to what is done for cystic fibrosis patients. The results showed that 52% of the patients had symptoms of anxiety and/or depression. The study also found that females were slightly more likely to have symptoms than males. The researchers hope to incorporate mental health screening into future care guidelines for pulmonary hypertension.

My name is Claire Parker. I’m a pediatric nurse practitioner in pulmonary hypertension at UCSF Benioff Children’s Hospital. I’m here today to talk about the results of a project that came from a group of nurse practitioners around the US and Canada, looking at the prevalence of anxiety and depression amongst adolescents with pediatric pulmonary hypertension. This podcast is a follow-up to a podcast that you may have heard previously with my colleague Elise Whalen, nurse practitioner at Texas Children’s Hospital. We’ve had a multi-year project looking at mental health amongst our PH population, and I’m here to tell you about our results.

I think we all know that mental health has been a real hot button issue amongst social media, amongst the general media. We’ve talked about it a lot more since the COVID-19 pandemic was in effect. We think it’s incredibly important to look at within the population of our pediatric pulmonary hypertension patients. In 2021, reports started coming out that mental health prevalence of anxiety and depression had doubled since the beginning of the pandemic. Both levels were around 11% amongst adolescents globally prior to the pandemic. Now, we’re seeing rates of depression around 20% and rates of anxiety around 25%. We also know that patients who have chronic illness have higher levels of anxiety and depression than their healthy cohorts. We’ve seen this in pediatric studies. We’ve seen this in adult studies, but no studies have been completed with pediatric pulmonary hypertension in mind. We were heavily inspired by the Cystic Fibrosis Foundation, who incorporates mental health screening in their annual checkups for CF patients. This means that it is standard of care to include mental health in your CF provider visit.

My colleague Elise, and I really felt that this would be very important for our pulmonary hypertension patients as well, because anecdotally we were seeing it in clinic. We could tell that some of our patients had anxiety and depression, although there was no set diagnosis and often we didn’t have the time to delve into it in clinic visits. Initially for our study, we did a survey amongst providers in the Pediatric Pulmonary Hypertension Network to see what they thought about mental health. What we found was providers feel like mental health issues are there. They see rates of anxiety and depression in their patients. They think it’s important to screen for it, but we also found that there were several barriers to their practice. They felt like they didn’t understand the screening tools. They felt like maybe it wasn’t within their purview and realm to talk about mental health. They felt like once they discovered mental health, that their hospitals didn’t necessarily have the resources to take care of the consequences of finding out that there’s issues with anxiety and depression.

So, we made a study just to see how much anxiety and depression there was. Essentially, we had a group of 10 different centers, mostly from PPHNet or the Pediatric Pulmonary Hypertension Network. They were all over the US and we had two locations in Canada. We created a centralized research project. We enrolled patients that were from the ages of 12 to 21. They had to have a diagnosis of pulmonary hypertension. They had to be able to speak or read English or Spanish. They had to be able to ascent to the study and they had to be able to complete the anxiety and depression screening on their own. The anxiety screening we used was the GAD-7. The depression screening we used was the PHQ-9, which are very standard, totally validated in this age group and in those languages.

What would happen is a patient would come into clinic. We only enrolled outpatient because we didn’t want whatever was going on with pulmonary hypertension in the hospital to affect our survey results. They would come in with their mom and dad. A research coordinator would approach them and tell them about the study. If they agreed to the study, the parents would be given a survey that they could complete on their phones. It asked questions about mental health history. It asked questions about school and household makeup and socioeconomic status. It also asked a few questions about how their family was affected by COVID-19. Separately, the patient would go ahead and complete the GAD-7 and the PHQ-9 in privacy. The research coordinators would then screen their screening assessments and give those scores to the providers. If there was intervention necessary, providers would either provide counseling and support or maybe make referrals to therapy.

Now, kind of to the interesting part are results. We enrolled 88 subjects in our study, 61.4% of them were female. Their average age was 15.8 years old and they were mostly non-Hispanic, White. The majority of the group at 84.1% were WHO Group 1, meaning our congenital heart disease, hereditary and idiopathic patients. The majority of them had a WHO functional class of 1 to 2, meaning that they had relatively good control over their disease. We did find about half of them were on triple therapy, including a prostacyclin. About 25% were actually on a continuous prostacyclin, meaning IV or Sub-Q Remodulin. 26% of our patients had a prior history of a mental health diagnosis and this could have been anxiety, depression or something else. We also saw OCD and ADHD listed amongst the diagnoses. 33% of those patients already saw a counselor or a psychologist for mental health support. 9% of them were currently taking medications for mental health conditions, and 23% had palliative care involvement.

Now, when we looked at their scores of the PHQ-9 and the GAD-7, we found that 42% of the patients scored for at least mild to moderate depressive symptoms, and 45% of the patients scored at least for mild symptoms of anxiety. When you combine those groups together, you find that 52% of our patients had anxiety and or depression. To us, it was really important to see if we could figure out why and who we should be screening more for mental health conditions in our PH clinics. We looked at a variety of factors from gender to race and ethnicity, to parental education and insurance and mental health diagnoses, and all of these factors about their pulmonary hypertension health. We really didn’t find much. The only factor that was statistically significant was gender. Females were slightly more likely to have symptoms of anxiety and depression than their male counterparts. This is really consistent with other literature that it’s out there both in pediatrics and in adults. The rest was non statistically significant findings, which really goes to tell us that we should be screening everybody because we can’t just say, “Oh, it’s the kids that are on Sub-Q Remodulin that we’re really, really concerned about.” There just was no evidence to prove that those were the ones that were more apt to have anxiety or depression.

We were very proud of our secondary outcomes. All 46 of those patients who had elevated PHQ-9 or GAD-7 scores, so at least mild to moderate anxiety or depression, had some sort of additional intervention. 58.7% of those patients had professional provider direct counseling or education. This was either a social worker or a designated mental health professional in clinic. 21.7% of those patients had a referral to psychotherapy, and 19.6% of those patients were assessed for suicide safety in clinic and also referred to psychotherapy.

We recognize that this really isn’t a perfect study. We had a small subject group, 88 people in the scheme of much larger studies is not very big. It may kind of dilute out those risk factors that we did not see in this population. This was also just a one-time anxiety and depression screening. We’re hoping that the clinics that participated, we’ll be continuing to screen for these patients at least annually and with given concern in clinic. But this was a one-time snapshot and we know how different we can feel from day to day, week to week, month to month.

We did have some refusal of our patients to participate in our study because they didn’t want to talk about their mental health. Now, this gives me red flags to say, we should be talking about it more then. If you don’t want to talk about it, is there something underlying the surface that could be helped or recognized? We still saw that there were a variety of resources amongst the hospitals for mental health follow up. Some of these patients lived very far away from their centers, and even if they got a referral to psychotherapy at their center, getting consistent follow up at a 100 plus miles away is really difficult, especially on the caregiver and the patient.

So what are we hoping will come of this? We recognize that there’s a high prevalence of anxiety and depression amongst our pediatric patients with pulmonary hypertension. To me, that tells us that we need to continue to look for anxiety and depression amongst our patients. We had over 50% of our patients screen positive for anxiety and or depression. I think that this is an excellent argument for programs to reach out to their hospitals and say, “We need more mental health support. These patients need access to psychology, psychiatry.” It’s underfunded and understaffed in the majority of institutions around the US. We think that this is just scratching the surface for areas of research. We’re interested in looking at quality of life amongst PH patients. We’re interested in looking at how their caregivers are coping. We’re interested in looking at resiliency factors and maybe why some of these kids who didn’t have high anxiety and depression scores do so well.

Really I think one of our very high in the sky goals for this research is to work towards incorporating mental health screening in future pulmonary hypertension care guidelines. We agree with the CF Foundation, we think this is of the utmost importance and creates care for the whole body and the whole family, which we and pediatrics really support. We think that this should be a standard of care for pulmonary hypertension.

So for all the listeners out there, I would highly encourage if you are experiencing any symptoms of anxiety or depression, to talk to your provider. If you don’t see a mental health specialist, that can be your PH care provider. This message can go to patients. It can go to caregivers. Mental health issues affect siblings. I think it is of the utmost importance that we’re taking care of ourselves both mind and body. Thanks for listening.

My name is Claire Parker, and I’m aware that my patients are rare.

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