Virtual Visits Likely Inadequate to Guide Pediatric PAH Care

In-person testing, exams play an important role in addition to telehealth

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Diagnostic testing plays an important role in guiding changes in treatment for children with pulmonary arterial hypertension (PAH), suggesting that virtual healthcare visits may not be an adequate substitute for in-person testing for many children with the disease.

That’s according to the study, “Factors Determining Change in Treatment for Ambulatory Children With Pulmonary Arterial Hypertension: Implications for Monitoring,” published in the journal Pulmonary Circulation.

“Our experience demonstrates the importance of testing in clinical decision making in pediatric patients with PAH. … These results support current recommendations for evaluation and testing in children with PAH,” the  researchers wrote.

Because pediatric PAH is a serious and progressive disease, routine monitoring is an integral part of care. This commonly involves physical examinations and taking patient histories to record symptoms, as well as laboratory and imaging tests. This monitoring collectively plays a key role in guiding treatment decisions, but there is little data available on which aspects of monitoring are most important for making decisions about care.

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When the COVID-19 pandemic hit the U.S in early 2020, many healthcare clinics had to make an abrupt shift from delivering care in-person, to performing visits virtually. While both virtual and in-person visits allow patients to talk about their symptoms and care with providers, virtual visits by definition do not have access to more advanced testing that is done in a clinic.

“It is uncertain if symptom reporting and limited video examination are sufficient for understanding the clinical needs of the pediatric PAH patient, and there are no data to define the adequacy of telehealth for pediatric PAH patients,” the researchers wrote.

Here, a team of scientists at Boston Children’s Hospital in Massachusetts conducted an analysis aiming to identify the monitoring factors that are most crucial for guiding care in pediatric PAH patients, with a particular eye toward applications for virtual care.

“To understand clinical decision making in managing pediatric PAH, we sought to characterize the critical factors contributing to change in ambulatory treatment management among pediatric PAH patients. In addition to identifying which clinical information is most likely to alter treatment plans, we specifically hoped to identify which patients might in the future be followed ‘virtually’ and which still warrant in-person clinical assessment,” the scientists wrote.

Study methods

The researchers analyzed data from 48 ambulatory children with PAH who were treated at their center from 2010 through 2019. Just more than two-thirds of the children were female, and the median age at diagnosis was slightly younger than 5 years old. Among the 48 children, 38 experienced a change in PAH-related clinical care.

Over the course of nearly 400 follow-up visits, there were a total of 88 changes in PAH-related care, most of which were adjustments to medication regimens. Statistical analyses showed that patients with more severe symptoms (WHO functional class 3 or 4) were more likely to undergo changes in care than those with milder symptoms (functional class 1).

Based on hospital records, the researchers classified each of the changes in treatment as being due to patient-reported symptoms, findings from a physical exam, results of diagnostic testing, or some combination of these three factors.

In total, 15% of changes were due to symptoms only (especially shortness of breath), while 2% were due to findings from only a physical exam, and 47% were made based only on diagnostic tests. The remaining 27% of changes were made based on some combination of the three; nearly all of these combinations included diagnostic testing.

Adjusting care based on test results

Overall, the most common reason for adjusting care, reported in more than half of care changes, was a change in pressure on the right side of the heart as measured by echocardiogram or catheterization, both of which are diagnostic tests.

“In total, the change in management in the majority (72%) of instances was attributed to diagnostic test findings themselves or in combination with symptoms or findings on exam, whereas symptoms and exams alone were cited as prompting 19% of management changes,” the researchers wrote.

“Given the prevalence of test results as drivers of management changes, we continue to believe that such assessments every 6 months remain important” in the management of pediatric PAH, they added.

The researchers noted that, since changes in care were less common for patients with less-severe symptoms, “carefully selected patients with higher functionality at baseline may be suitable for alternating virtual and in-person visits.”

However, the data indicate that “testing and exam play an important, additive role to what virtual visits alone might provide,” the team wrote, highlighting the need for at least some routine in-person visits for all patients.