In patients with pulmonary arterial hypertension (PAH), education is necessary to provide a better understanding of the role of palliative care in optimizing quality of life, according to the results of a single-center prospective exploratory study published in the Annals of the American Thoracic Society.
Patients with PAH may benefit from the introduction of palliative care as part of the standard care. However, one of the barriers to its implementation is a lack of understanding of what palliative care entails.
Researchers evaluated the interaction of patients’ perception of palliative care (N=49), severity of symptoms, disease impact, and PAH risk status by using the Perceptions of Palliative Care Instrument (PPCI), the Pulmonary Arterial Hypertension-Symptoms and Impact (PAH-SYMPACT) Questionnaire, and the Registry to Evaluate Early and Long-Term PAH Disease Management (REVEAL 2.0) risk scores.
There were significant correlations between the severity of cardiopulmonary symptoms and PPCI scales of negative feelings (P =.004), emotional needs (P =.02), practical and total needs (P =.035), and perception of burden (P =.004). Additionally, significant correlations were found between the severity of physical and cognitive/emotional effects and PPCI scales of emotional needs, practical and total needs, and perception of burden.
Patients with intermediate to high risk REVEAL 2.0 scores (≥7) had a statistically significant higher burden of symptoms and disease as measured by PAH cardiopulmonary symptoms, PAH physical effect, and PAH cognitive/emotional effect compared with patients with low REVEAL 2.0 risk scores (≤6).
Researchers also asked the patients to respond to the following statement: “I would be more accepting of palliative care if it was called supportive care.” Of the 49 patients, 31% agreed, 47% did not agree or disagree, and 22% disagreed.
“Further studies are needed to better understand the perception of palliative care in PAH patients along with exploring the appropriate timing of palliative care introduction in the management of PAH patients,” the study authors concluded.
Hrustanovic-Kadic M, Ziegler C, El-Kersh K. Palliative care perception in PAH: evaluating the interaction of PPCI, PAH-SYMPACT questionnaire, and REVEAL 2.0 risk score. Ann Am Thorac Soc. Published online September 16, 2020. doi:10.1513/AnnalsATS.202005-552RL