Patients With PAH Fluctuate Between Feelings of Devastation and Hope

In an abstract presented at CHEST 2020, investigators revealed that the emotions that patients with pulmonary arterial hypertension (PAH) regarding their illness are more complex than previously thought.

Previous research on patients with pulmonary arterial hypertension (PAH) examined patients’ experiences with anxiety and depression at fixed points in time. A recent abstract presented at CHEST 2020 showed that patients’ feelings about the disease are complex, and they may actually cycle through bouts of devastation and hopefulness.

Investigators analyzed answers from 2 cohorts of patients that were entered into a secure, interactive website that met requirements of the Health Insurance Portability and Accountability Act. Patients completed a series of mixed-methods activities on the site once a day for 5 days. Activities involved selecting photos that represented their emotions regarding how they felt living with their disease.

In total, responses from 59 patients were evaluated. The original cohort included 33 patients who submitted their responses on 5 days in December 2017. The second cohort was engaged between April 9 to May 2, 2019, and included responses from 26 patients with PAH.

Researchers found patterns of 2 distinct mindsets among patients regarding the impact of PAH: one mindset focuses on devastation the condition can cause, and the other centers on hope and relationships. Patients can move between both mindsets.

In the abstract, researchers included an example of a patient who detailed the shift from 1 mindset to the other, writing, “gloom, fear, sadness and darkness. This is how I felt from the onset of diagnosis and at times since diagnosis. It hasn’t always been gloomy, but there are certain times that I go back to that place in dealing with this disease,” and on another saying, “PAH has made me more aware of how short life is. It has reminded me that family and friends are most important in my life. It has made me want to spend more time with family [and] friends, time enjoying life.”

Investigators said that the methods that they used in the study helped them to better understand the full extent of emotions that patients experience living with PAH and that they can vary over time.

“These results have implications for health care professionals managing PAH patients and suggest adopting a more holistic approach to patient management that includes frequent psychological assessments and the use of interventions that will help people get the psychological support they need throughout the course of their disease,” wrote the investigators.


Pozella P, Bartlett M, Hansen L, Harris D. Understanding the psychological mindset of people with PAH. Presented at: CHEST 2020; October 18-21, 2020. Abstract A1847. doi: 10.1016/j.chest.2020.08.1603