Patients’ perspectives on the challenges associated with receiving non-oral pulmonary arterial hypertension treatment: a mixed methods study

Abstract

Background: Impaired quality of life (QoL) among pulmonary arterial hypertension (PAH) patients has been often attributed to increased symptomatology, functional disability, and poor mental health; however, the unique impact that PAH treatments may exert on the daily lives of patients remains underexplored. Objectives: To gain insight into the day-to-day challenges associated with receiving non-oral PAH treatments, and the specific impact these may exert on patients’ QoL, above and beyond that exerted by PAH itself. Design: Explanatory sequential mixed methods design. Methods: Eighty-three PAH patients provided information on demographic and clinical characteristics, and completed measures of symptomatology, functional disability, QoL, psychological well-being, and perceived stress. Nine of these patients also participated in a focused group discussion and interviews. Results: No group differences in symptomatology and functional disability were observed between patients receiving oral-only and non-oral PAH therapy; however, patients on non-oral therapy reported poorer QoL, after taking into consideration the effect of relevant covariates (i.e., age, level of symptomatology and functional disability, psychological well-being, and perceived stress) that could have confounded the observed group differences in QoL. Participants who started on non-oral medications acknowledged they had experienced significant improvements in health status. However, they also stated that transitioning from oral to non-oral therapy elicited great apprehension and that non-oral therapy regimens interfered with daily activities, resulted in added difficulties for self-management, and negatively impacted their subjective well-being. Conclusion: Non-oral therapy regimens may pose challenges beyond those posed by PAH itself, potentially resulting in an added burden to the QoL of PAH patients.